B-12 deficiency & CIDP

    • July 22, 2008 at 10:37 am

      I was recently diagnosed with “B-12 deficiency” at the Baylor College of Medicine in Houston. My initial diagnosis (from the EMG and nerve conduction) was CIDP. Blood tests confirmed the “B-12 deficiency” diagnosis. My treatment is intramuscular B-12 injections once every three months. I have had three injections so far. I was supposed to have seen some improvement weeks ago, but my sensory and motor neuropathy continues to decline.

      The question I wanted to post is: Has anyone with CIDP ever been diagnosed as “B-12 deficient” and then later had it turn out to be CIDP?

      Since B-12 doesn’t seem to be doing any good, I’m wondering if B-12 deficiency is a symptom and not the root problem.

      Thanks, Gary

    • Anonymous
      July 22, 2008 at 12:41 pm

      What tests did you have done to confirm your diagnosis of CIDP? Did they do brain & spinal MRI’s and a spinal tap along with the EMG?

      If you have elevated protein in your spinal fluid then you would definetly have CIDP & your problems weren’t just caused by your low vitamin B. The vitamin deficiency could be caused by a number of things & may not be your only problem…it could contribute to your health problems though.

      Did they do a repeat blood test to check your vitamin B levels? I’ve read that it’s a good idea to have more than 1 done because sometimes your levels will be lower than at other times.

      If you are not experiencing any relief & you feel that you are getting worse then you need to contact your dr ASAP.

      Good luck,

    • July 22, 2008 at 1:36 pm

      Thank you Kelly for the quick response.

      I have had two blood tests to date that showed B-12 deficiency. The initial one was done at the same time as the EMG & nerve conduction on my initial visit to the neurologist. The EMG department diagnosis was CIDP based on the nerve conduction and velocity tests.

      I have not had a spinal tap.

      My neurologist was convinced that B-12 deficiency was THE problem after the second blood test confirmed the first results. (Of course he was also convinced that I had charca marie tooth based on my initial motor skills assessment). I guess he thinkgs the B-12 diagnosis is so conclusive that the spinal tap is unneccessary.

      I was relieved with the B-12 deficiency diagnosis, but now I am questioning if it is indeed the whole picture.

      I was initially in constant contact with my neurologist (they knew my phone number by heart), but they have a way of making you feel impatient and somewhat of a pest.

      Thanks again for listening and responding.


    • Anonymous
      July 22, 2008 at 2:11 pm

      Call your neuro & let them know that you aren’t getting any relief from the shots & you actually feel like you are getting worse. If they don’t take you seriously then find another dr. When is your next scheduled appointment? I’m assuming he is keeping a close on eye on you & wants you to come in regularly to be evaluated.

      Ask the dr to do a spinal tap to check your protein levels. I’m very surprised that he didn’t follow up with it after your EMG, just to make sure that he covered all of his bases.

      On an EMG anything registering less than 26 is indicative of CIDP. I would assume if you had results with less than 26 that the dr should feel obligated to explore that diagnosis futher.

      On the other hand, a B-12 deficiency is probably more common than CIDP. Maybe he thought it best to go with the diagnosis that is more likely. Sometimes, in medicine, it’s a game of ruling out illnesses before you get to the correct diagnosis. Charcot Marie Tooth was suggested as a possible diagnosis for my daughter as well.

      Do NOT feel like a pest. YOU PAY THE DR TO WORK FOR YOU! If your employer has questions on your work you wouldn’t dare make him/her feel like a pest.You do what they ask because that is what you get paid to do. Same thing goes for dr’s. They work for you! You are not at your dr’s mercy or at the office staff’s mercy. If it wasn’t for you & your insurance company that dr wouldn’t get paid & his staff wouldn’t get paid either. That’s the mindset you need to keep.

      Good luck,

    • Anonymous
      July 22, 2008 at 2:29 pm

      I too have a B-12 problem but with an unexplained neuropathy. Going to see the neuro today and hope I get some answers soon. Tired of being sick! Hope they get you straightened out. I beginning to think with me I will never get diagnosed! Hugs

    • Anonymous
      July 22, 2008 at 3:06 pm

      Hi everyone, I had a friend who had MS and he was told that B-12 deficency is often a symptim of MS. Maybe do some research around that as I am not totally familiar with this but it is certainly something to look into. I think when it comes to neuropathy, there are so many similarities between some of them that it makes diagnosis a challenge.

    • July 22, 2008 at 3:16 pm

      Thanks Linda and Kelly.

      Linda, my B-12 deficiency is due to lack of “intrinsic factor” which is produced in the stomach. I’ve lost the ability to produce “intrinsic factor” so I can no longer absorb B-12 through the digestive tract. I have to take intramuscular injections. The source of my demylanation is still unexplained, but the lack of B-12 prevented repair. I am experiencing both sensory neuropathy (fingers, palms, forearms, feet, toes, lower leg, lips, and right cheek) and motor function neuropathy (feet, heals, toes and fingers). I was told my case is “extreemly rare” (those are not comforting terms when dealing with your health) in that I didn’t show any evidence of anemia with the B-12 deficiency. I would love to hear back on your diagnosis and treatment. My treatment is 1000mg B-12 every 3 months, which is atypical from my research. Best Wishes …

      Kelly, thanks for the reminder on “whose the customer/boss”. I was surprised as well with the lack of a spinal tap for the same reason. But I was a troubleshooter/diagnostician early in life and my brain is wired to run tests to cover all the bases. I talked with my neurologist’s assistant just before lunch and she said that they would get me orders for another injection and to keep my regular follow up appointment (mid-August). If I continue to see a decline in my motor function or if the injection doesn’t help soon, I will press to move the appointment up. And press for the spinal tap. Thank you for sharing and congratulations on your daughter’s outcome. It is encouraging for those of us who are in the middle of this and new to it.


    • Anonymous
      July 22, 2008 at 3:40 pm

      A B12 deficiency can cause tingling and other central nervous system problems. I learned recently that a B12 deficiency can be caused by getting gastric bypass surgery. Also, taking Prilosec or Nexium for acid reflux can reduce your body’s ability to absorb it. I think being on Alli can reduce your ability to absorb it, too but I’m not 100% certain.

      I was on Prilosec for quite awhile and had low levels of B12 show up in the initial blood work I had done when my symptoms started getting bad. As a result, I take a high dose B12 supplement with my multivitamin every day.

    • Anonymous
      July 22, 2008 at 6:41 pm

      Hi Gary! I am new to the forum also and am getting ready to post my story! This one get’s very interesting~

    • Anonymous
      July 22, 2008 at 7:08 pm


      On an EMG anything registering less than 26 is indicative of CIDP. I would assume if you had results with less than 26 that the dr should feel obligated to explore that diagnosis futher.

      Good luck,

      Hi Kelly could you tell me what is the highest number to get on an EMG? I never got a copy of my EMGs but always tried to peek at my result when the DR and technician review my results. I also wonder if the number are the same in Canada as the USA because we run on metric system. I know once I saw a number and it was 12 and some others 18,20. Couldn’t see them all.
      Would you know of a website that explain this in details or have charts?

      Thanks for your time.


      PS: I had the needle in the muscle test but I think what I was talking about was the NCV oops! The zap test of my nerves in my hands and feet.

    • Anonymous
      July 22, 2008 at 7:18 pm

      I understand that B12 deficiency can cause a problem very much like CIDP and that you do not have to have the blood problems. the good news is that the neuropathy of B12 deficiency is more easily treatable. The bad news is that nerve damage is nerve damage and you have not seen reversal of the nerve damage. I work with children with blood problems and B12 deficiency due to lack of intrinsic factor (Pernicious anemia) is very, very rare in children,but when we had a child with this problem and low B12 levels and neuropathy and blood problems for him, he was treated a lot more aggressively than you are getting. I think he had two weeks of daily B12 shots and then 2 months of weekly and then monthly shots. I looked up in a drug book and for adults with pernicious anemia, it is recommended to get 100 micrograms a day into a muscle or under the skin daily for a week and then, if there is improvement, the same dose every other day for the next two weeks. If there is improvement next go to every 3-4 days for 2-3 weeks and finally monthly. At another place, it says for complicated B12 deficiency (with severe anemia, severe neurologic damage, heart failure symptoms, or other blood count abnormalities) to get 1000 micrograms into the muscle or under the skin with a dose of IV folic acid 15 mg, followed by daily doses of 1000 mcg injected daily for a week with oral folic acid. Maintenance is 100-200 micrograms injected monthly.

      You really, really are not getting enough if you are to get this every three months. You need more now and it needs to be aggressively given because there is ongoing damage. Getting vitamin B12 will prevent further damage from happening, but you will be left with much of the damage that has happened.

      If one has one autoimmune process–such as pernicious anemia where antibodies attack the upper digestive system where B12 is absorbed, one can have a second autoimmune process like CIDP. If as the neurologist says, he thinks this neuropathy is due to B12 deficiency, you need much more aggressive treatment and if things still progress, then it might be CIDP. The first order of business is lots more B12, though.

      WithHope for a cure of these diseases.

    • Anonymous
      July 22, 2008 at 10:04 pm

      Gary, I live in Lake Charles. My neurologist in Baton Rouge scheduled a spinal tap (lumbar puncture) at the end of my first visit with him, immediately after the EMG had confirmed his initial diagnosis of CIDP. He told me that my insurance company would not pay for IVIg, which was to be his recommended course of treatment, without a positive indicator of high protein levels in the CSF.

      Because it appears that I will require higher doses of IVIg, he has turned me over to Dr. Stanley Appel, Chief of the Methodist Neurological Institute, in Houston. I’m scheduled for my first IVIg with Dr. Appel, at Methodist, on Tuesday of next week.



      (Note: Remove the blank space in C ONTENT)

      Dr. Appel’s secretary is Ella Hawkins. Her direct number is 713-441-3760 and her email is ehawkins@tmhs.org

      I’m somewhat apprehensive about changing IVIG locations. But, because of what I’ve learned on this board, I know to insist, prior to treatment, that the infusion lab at Methodist provide me with the brand of Immunoglobulin that they will be using (I was getting Carimune in Baton Rouge), the amount that they will be infusing (63 gm), and the infusion rate (beginning at 50 cc/hr, then gradually moving up to 200 cc/hr). We each bear the ultimate responsibility for insuring that we are receiving the correct medication and dosage.

      Kelly’s advice was spot on. At this stage, time is your enemy. You don’t need to be rude but you do need to be assertive. You can ill afford to wait months between treatments, to determine if there are any positive effects, while your condition may be worsening.

    • Anonymous
      July 23, 2008 at 12:57 am

      Sue – An EMG, at least the 3 that Emily had, consists of both the needle in the muscle with zapping & the ummm….metal sticky circle thingys along with zapping. (I’m really tired & apparently my brain is just not wanting to work for me tonight)

      I’m not sure what the most you can get on an EMG is. It’s been a long time since I did research on them. I found a website that talked about the diagnostic criteria for CIDP & one of them was an EMG registering less than 26. I’ve been trying to find the web page but cannot for the life of me come up with it. It was bookmarked on my old computer & the motherboard crashed…I lost everything.

      I did a quick Google search & did find these links. They aren’t what I read before but if you feel up to interpreting dr speak, they might be slightly helpful. I just skimmed through them.




      I’ll keep searching for that other website. It’s driving me crazy because I know exactly what the page looked like…I can picture the text & everything in my head.

      Hope that helps some.

    • Anonymous
      July 23, 2008 at 7:37 am

      Thank You Very Much Kelly 🙂
      I will look at those links. Don’t worry about the other one.


    • Anonymous
      July 23, 2008 at 7:55 am

      Kelly I am looking at the Dutch study and it is very interesting I never read this before not done yet reading it all but it talks about the low values and that is exactly what I wanted. Awesome

      Thanks 🙂


    • Anonymous
      July 23, 2008 at 9:39 am

      Great Flow chart


    • Anonymous
      July 23, 2008 at 11:23 am


      That web site the chart is on seems pretty informative to the layperson.
      How ofter do you suppose the doc’s follow this treatment protocol?
      There seems to be too many variables that add lots of gray area to the situation.

      Its a bummer that if just one of the diagnostic criteria don’t fit, it seems to
      throw the doctors for a loop. Then you get into the possible and probable arena.
      The B-12 being out certainly adds alarm to the situation but I wouldn’t hang my hat
      on that finding with your symptoms. One would think they would think past that and wonder
      what if and get working on that asap. As uncomfortable as the Lumbar puncture is, I would
      really push for that. It takes a good 4-5 days for the cultures and results. Your primary
      care doctor can order that.

      Just wondering, your thoughts here. thanks. tim

    • July 23, 2008 at 4:22 pm

      Thank you all for the B-12 discussion. I talked with my neurologist’s assistant yesterday and the gave me orders for another B-12 injection. I took it this morning.

      Monday and yesterday were very rough days neurogically and physically.The foot drop, leg stiffness and motor control and numbness in my fingers were the most pronounced they have been. I have found that regular (daily) exercise is very important to my health. I can swim, use weight machines, use an elliptical machine, ride a bicycle (I have fall down a couple of times like the tricycle guy on Laugh-In when I stop and try to balance on one leg). You younger folks won’t understand that one.

      If I don’t see marked improvement from this last B-12 injection, I’m going to insist on more B-12 and further diagnosis.

      My Neurological Chiropractor here in Houston has given me a product called “Biofreeze” which seems to “wake up” my sensory nerves temporarily and really cools them down. By the way, my Neurological Chiropractor has spent much more time listening to me, researching, assessing my motor and sensory functions and knows my overall condition and the neuropathy progress than anyone. And she has spent much more time listening treating me (adjustments and physical therapy).

      I highly recommend checking into neurological chiropractic. I found mine at their Certification board web site link: [url]http://www.acnb.org/[/url]

    • Anonymous
      July 23, 2008 at 5:47 pm

      I agree the others and With Hope. you might also inquire into oral b12 which is now considered as effective as injections. my patients all got monthly injections, every month, forever and ever. funny, i have been going to an accupuncture the past couple of weeks (i’ll try anything) and I have gotten b12 injections, but no results for me:( but you never know….they stick one needle in the middle of my forehead and i’m convinced my brain cells have leaked out!

    • Anonymous
      July 23, 2008 at 6:07 pm

      For people who want the site with flow chart here it is.



    • Anonymous
      July 23, 2008 at 6:10 pm

      [QUOTE=gab111]you might also inquire into oral b12 which is now considered as effective as injections. [/QUOTE]

      I get 2500mcg sublingual B12 tablets at Walmart for fairly cheap. I take one every day, under the tongue. They actually don’t taste bad either, which is always a bonus!

    • Anonymous
      July 23, 2008 at 7:58 pm

      All that I have read about B12 is that oral B12 DOES NOT work nearly as well as intraveneous and it is stated the oral form should not be used if there is a severe deficiency or deficiency with serious concerns. The fact the oral form does not work well is especially true if someone has pernicious anemia since they do not have the intrinsic factor to help in the absorption from the gut. The newer formulations that are given under the tongue (sublingually) or into the nose (intranasally) are absorbed better and MIGHT be good enough for “maintenance” if taken in large doses, but I looked it up again in a drug book and the absorption with the into-the-nose formulation is 6% compared to that given into a muscle. Absorption of the oral form in pernicious anemia is 1.2%–meaning only 1.2% of the drug taken by mouth is absorbed so if you take 1000 mcg, you actually might get 12 mcg (or less) and you should get at least 100 mcg right now. Personally with something as serious as neuropathy that affects life–and understanding that it is not completely reversable, I would take/advise to take the best known way to get B12 into your body. Yes, shots are a pain (literally), but you want to best chance to reverse and allow healing. We had this discussion with the 10 year old who was really unhappy about daily shots, but we told him that that was the best way to help him feel better faster and be safer for him.
      WithHope for a cure of these diseases

    • Anonymous
      July 23, 2008 at 9:49 pm

      [QUOTE=GaryO Houston]Thank you all for the B-12 discussion. I talked with my neurologist’s assistant yesterday and the gave me orders for another B-12 injection. I took it this morning.

      Monday and yesterday were very rough days neurologically and physically foot drop, leg stiffness and motor control and numbness in my fingers were the most pronounced they have been. I have found that regular (daily) exercise is very important to my health. I can swim, use weight machines, use an elliptical machine, ride a bicycle (I have fall down a couple of times like the tricycle guy on Laugh-In when I stop and try to balance on one leg). You younger folks won’t understand that one.

      If I don’t see marked improvement from this last B-12 injection, I’m going to insist on more B-12 and further diagnosis.

      My Neurological Chiropractor here in Houston has given me a product called “Biofreeze” which seems to “wake up” my sensory nerves temporarily and really cools them down. By the way, my Neurological Chiropractor has spent much more time listening to me, researching, assessing my motor and sensory functions and knows my overall condition and the neuropathy progress than anyone. And she has spent much more time listening treating me (adjustments and physical therapy).

      I highly recommend checking into neurological chiropractic. I found mine at their Certification board web site link: [url]http://www.acnb.org/[/url][/QUOTE]

      Gary, I also tried a neurological chiropractor for my back issues. I had much the same experience you had with yours. He spent time with me, listened to me, and researched my condition. In the end, though, he couldn’t fix severe spinal stenosis. That could only be fixed by a spine surgeon.

      I believe your situation is much the same. Although your neurological chiropractor can make you feel good, both mentally and physically, all the adjustments and physical therapy in the world won’t put CIDP into remission. You’ll need a MD neurologist to prescribe the proper course of treatment.

    • Anonymous
      July 24, 2008 at 12:49 am

      My husband has a B12 deficiency. I give him injections in his leg. Until this thread was started I never realized it could be linked to his CIDP. Our primary care doctor is the one who discovered his B12 problem. It makes him not feel as tired when he takes the shots. It however does not seem to help with his CIDP.

    • July 24, 2008 at 2:54 pm

      Kithlyara, I also take sublingual B-12 4000-5000mcg each day. I mainly do this as I had also researched B-12 regiments and my B-12 injection regiment is not nearly as aggressive as “typical”.

      Interestingly I was taking sublingual B-12 (1000mcg) daily prior to my symptoms appearing and diagnosis. I picked some up by accident (intending to get “B Complex” and started taking it for energy. I used to work out pretty hard every day.

      I don’t know if the sublingual B-12 is helping or not. I am running my own test though. I already have my baseline with sublingual B-12 1000mcg (first and second blood tests). My next blood test will be with B-12 injections and sublingual 4000-5000mcg daily. I will then quit taking sublingual suppliments and see what my fourth blood test shows.

      Sorry, I’m an engineer by education and sometimes I just can’t suppress it.

    • July 29, 2008 at 11:13 pm

      I’m on my way to Baylor College of Medicine (BCM) Houston tomorrow for further Dx and testing tomorrow. Now I’m armed with all the knowledge and help you all have given me and that gives me confidence.

      I’m trying to get set up with another neurologist there who specializes in Neural Muscular disorders.

      My heartfelt thanks to you all,


    • July 30, 2008 at 8:24 pm

      I saw a new neurologist today at BCM. B-12 deficiency is not what is causing my neuropathy. He suspects it’s “inflammatory”. (Seems I’m about to be an official member of the CIDP Dx club).

      He’s ordered MRI of the head and neck, Pulmonary Function Test (PFT), my 2nd EMG, lumbar puncture, and a battery of blood tests.

      I had the MRI and PFT today. I will have the EMG and blood tests tomorrow.

      I wasn’t able to schedule the lumbar puncture until 1 week from today because I had taken an aspirin and they won’t do a lumbar puncture until one week has passed since your last “blood thinner”. 🙁

      I’m thinking of pressing the neurologist to begin treatments if the EMG indicates CIDP again so I don’t have to wait another couple of weeks. (Things have been deteriorating daily for me the last four days).

      Curiously (?) I have had some improvement in my reflex response in my feet and legs. And my neuropathy has been cyclical (some improvement and some deterioration). Is this typical? :confused:

      Do y’all have any sage advice or experience on pressing for treatment early (before spinal tap confirmation)?

      Again many thanks and God bless.

    • July 30, 2008 at 8:37 pm

      I’ve tried to upload my photo and wanted to see if it works. Since I’m going to be a card carrying member, you might as well see what I look like.

      This is a photo of me at my youngest son’s wedding a few years ago.

      Is this the 1st photo with a tux? 😀


    • July 31, 2008 at 6:35 pm

      I had my 2nd EMG this morning 🙁 . Quite an unpleasant experience, but tolerable. Several “blockages”.

      My original numbers were in the 40’s (some in the 50’s). I asked the neurologist running the test this morning how my new test numbers compaired with the 1st EMG. He said for the most part the numbers were similar; some of the numbers were worse.

      The bottom line is that the CIDP Dx was confirmed. My B12 deficiency diagnosis, although correct, is not root cause of the demyelination. Seems whatever is attacking my myelin probably attacked my intrinsic factor producers as well. I knew by listening to my body that the B12 Dx didn’t make complete sense.

      I wish I had continued to press harder for root cause of my demyelination.

      Lessons learned for anyone following the Neuropathy Diagnosis Journey – 1) listen to your body and your feelings; 2) keep pressing for answers.

      But that’s all water under the bridge now…time to move on…

      I’m now pressing to begin treatment ASAP. My new BCM Neurologist (“much more experienced in CIDP” according to EMG Lab head) is advising that I hold off on treatment until after my lumbar puncture next Wednesday because treatments may affect the test results.

      I think this latest wave of “CIDP attack” on my body is waning. I’m feeling not quite as poorly today as yesterday. So I guess if I hold or continue to feel stronger, I’m thinking waiting about a week to begin treatment is ok.

      I did tell the neurologist though that I wanted to discuss treatments before Wednesday so we can choose my course of action and be ready to go next Wednesday afternoon.

      Apologies for the length of this, but I think sharing our Journey could really make a difference for someone following.

      God bless you all for this site and for posting, reading and replying.

      Hoping and praying for a cure …

      Gary O.

      Would love to hear from y’all out there on treatment wisdom/experiences and effectiveness.

      PS…Trey is workin on the photo. I thought I am a computer geek, but it seems I [U][B]was [/B][/U]a computer geek… 😀

    • Anonymous
      July 31, 2008 at 8:44 pm

      Gary, I was at Methodist Tuesday and yesterday, getting my first round of IVIg in Houston. My neurologist in Baton Rouge turned me over to Dr. Appel because he wasn’t comfortable with the increased dosage recommended by Dr. Appel.

      I’m getting 600 mg/kg (63 gms) on two consecutive days every three weeks. I was getting Carimune in Baton Rouge, but Methodist supplied Gammagard. I had told the folks at Methodist that the Baton Rouge clinic was pre-medicating me with 125 mg of Solu-Medrol to mitigate potential allergic reactions, but they insisted that 25 mg of Benadryl would handle it. I’m normally an assertive person, but I went along with this. Well, towards the end of the 5 hour infusion, I broke out in welts all over my upper torso and my upper lip began to swell. That sure got their attention, and they had 125 mg of Solu-Medrol in me before you could bat an eye. The welts and the swelling disappeared within an hour. The second day, they made sure to get the Solu-Medrol in me before they started the infusion.

      Less than 24 hours after the first infusion, the neuropathy in both feet had noticeably lessened and most of the tingling is still gone. I must have still had some of the Ig in me from the last treatment. The last time this happened, the tingling came back after a week, but that dosage was only half of what I received this time. Hopefully, the increased dosage will continue to have positive effects.

      After your lumbar puncture, keep pressing them. Only you really know how you feel. I agree that we all need to share our journeys. I’ve learned more from this forum in a very short period of time than I learned by doing months of my own research.

    • Anonymous
      August 1, 2008 at 8:59 am

      Gary! This is what happened to me also. I have the B-12 Injections along with the tablets but they now know my nerve damage is CIDP also. Just trying to find the cause so they can start treatment. Welcome to the family! 😀 Looks like me and you both are going through testing and more testing. Good luck with what they find

    • August 1, 2008 at 10:09 am

      Thank you LindaH and Rod for the replies.

      Rod, I’ve heard Dr. Appel spoken of very highly (you’re in good hands). I’m now seeing Dr. Mosier and think I’m in good hands now for CIDP. Thanks for sharing the allergic reaction info, I will be asking that question now as well. I’m sorry though that you had to go through it for me to learn what not to do. You must have been either extremely alarmed or thinking “well, what else could go wrong”?

      These postigs are a wealth of information that I’d like to be able to carry with me to the doc. Is there any way to print out individual postings or threads?

      Linda, I’ve been keeping up with you through the other postings. Thank you for sharing openly. I have a tremendous supportive family, church and friends as a support group, but for some reason it does help too knowing you’re not alone in what you’re experiencing; talking with others who know what you’re going through. I am concerned that we haven’t heard anything back from Alice yet.

      I pray God’s richest blessings on you both; healing, strength, peace, comfort, and encouragement.

      Gary 😉

    • Anonymous
      August 1, 2008 at 11:43 am

      Gary, if you’ll click on [B]Thread Tools [/B]at the top of this thread, you’ll get a drop down menu. One of the items on the menu is [B]Show Printable Version[/B]. Select that option, them right click anywhere on the screen, select [B]Print[/B] from the pop up menu, and you’re off and running.

    • August 1, 2008 at 8:16 pm

      Just talked with my neurologist about treatment. He recommended trying the IV Steroids first. I was leaning towards PE. 🙁

      He said he’s had good success with IV Steroids and would follow up with IVIg as needed.

      Has anyone out there had success with IV Steroids? Are they the “normal” 1st approach? :confused:

      Thanks, Gary

    • Anonymous
      August 7, 2008 at 12:09 am

      [COLOR=black]Hello Gary,[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]While IVIg is considered the first line of treatment by the Peripheral Nerve Society, there are several doctors who will use steroids (IV or orally) first. They are cheap and very often very effective. When I was first diagnosed, I received Solumedrol (IV steroid) and had rapid relief of my symptoms. Admittedly, it did not last, but it was a very good first attempt.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Even though I do plasma exchange as one of my main lines of treatment, I would recommend you IVIg first. If you have to have central venous access (a catheter), you will require considerable commitment to keep the catheter in good shape. That said, if IVIg does not work for you, plasma exchange could be a very good option.[/COLOR]
      [COLOR=black] [/COLOR]
      [FONT=Calibri][SIZE=3] [/SIZE][/FONT]

    • Anonymous
      August 7, 2008 at 12:42 am

      Depending on the severity of the nerve damage they do try different options. Sometimes the IV Pulse Steroids or high doses of the pill form tapering down bit by bit. Pulse Steriods for my Lupus and Neropathy back then in the 90’s helped me alot. Have not done the IVIG’s yet and hope to do so.
      Have seen some that do the Pulse Steroids and that helps them and the problem never comes back while others need stronger methods to fight the nerve damage!
      What I can’t understand is if you have the B-12 Intrinsic Factor why they did not start you out with the 5 shots the first week, then every two weeks a shot to then go on monthly. That is how I did. But the shots wear out to quickly for me and I do two a month instead. Plus the Bi-Lingual B -12 Vitamins under my tongue each day. Now taking the Folic Acid with mine also.
      Normally they start a high dose of B-12 that first week and then taper down. Meaning it keeps your B-12 a certain level. That 3 months might now be helping you much and the B-12 could be wearing off keeping you low in B-12 not getting enough and still causing damage possible.
      I think I would talk with doctor about increasing it to a higher level. But still be checked out for other things at the same time. I wish you my best!
      Linda H

    • Anonymous
      August 7, 2008 at 11:16 am

      I think more Dr’s will be, over time, making pulse steroids the first line of defense over IVIg.
      Money plays a big part of it, steroids are cheap IVIg is not. Supply of steroids is also consistent, IVIg can be hard to come by at times.
      The big thing though is that there are studies which basically say that pulse steroid therapy is as good as IVIg in treating CIDP. I am no way saying that it works for everyone, just saying that these studies exist…google them. There are many Dr’s, such as Dr Parry, who have steroids being the first line of defense. High profile Dr’s can change the tide as to treatment strategies.

    • August 7, 2008 at 11:40 pm

      Thanks all for the replies. I’ve been out the last couple of days in a whirlwind of procedures.

      I had my lumbar puncture Wednesday and begun my treatment with my 1st PE this afternoon. The second PE is tomorrow.

      I’ve heard third hand that my neurologist is thinking pulse steroids may not be for me due to my glucose tolerance blood test. (I’m supposed to see him tomorrow and I will hopefully know more then). I am not diabetic so I’m not sure what that’s all about.

      The lumbar puncture was not a big deal. During the PE though I had a drop in blood pressure (I don’t remember what that is called (v——–)). It was unpleasant, but corrected quickly and the procedure finished. I was told it probably won’t happen a second time.

      I will repost as soon as I hear back from my neurologist about the pulse steriods and/or after my next PE.


    • Anonymous
      August 8, 2008 at 10:12 am

      Gary, good luck with the P/E. I had 5 treatments and every time my BP dropped but returned after the procedure. The tech said that was normal. Also, the P/E did not help me at all, hopefully for you it will.

      Good Luck


    • Anonymous
      August 10, 2008 at 10:45 am

      Hello Gary,

      On the glucose issue, if you have a glucose tolerance issue or an impairment fasting glucose, you are probably pre-diabetic. What we call steroids are actually glucocorticoids, one of the two types of corticosteroids. One thing glucocorticoids do is increase glucose production. If you are already trending towards diabetes, adding glucocorticoids is like you to push you over the edge. Still, by changing diet and increasing exercise and accepting one day a week with high glucose, it would be possible to use pulsed steroids. It is a matter a weighing the management of diabetes against the management of CIDP.

      On the plasma exchange, there is a reasonably good chance you won’t have a blood pressure drop the next time. However, there is also a good chance you will. I do nearly every time. It resolves to the point where I am no longer dizzy upon standing within 15 minutes. The treatment itself leaves me feeling a bit messed up for a few hours. I am functional, and occasionally go back to work afterwards, but I definitely do not feel great.

      The event you had, especially if it was sudden, was a vasovagal event. It would be good to remember the symptoms. In my case, they include a slight nausea, a clammy feeling, an increase in tinnitus, and finally a disruption and narrowing of the field of vision. You can then monitor yourself and call for your nurse at the first signs. You will feel better overall for it.

      Godspeed with the rest of your treatments,

    • August 25, 2008 at 3:29 pm

      I’ve been out awhile so I thought I would provide an update …

      I’ve now had 5 PE’s (5 in 7 days – they gave me the weekend off). I had a B-12 injection and left for Seattle to embarc on an Alaska cruise the day following my last PE. My worst 🙁 CIDP day so far was the next day in Seattle before we boarded the ship.

      🙂 More on the cruise at a latter date 🙂 .

      The good news 🙂 is that the PE’s seem to have worked. I have regained significant motor control and strength in my fingers, wrists, toes and feet and I am seeing daily improvement. The sensory has improved significantly as well, but sensory seems to also wane somewhat throughout the day.

      I have a follow up with the Neurologist on September 5th and he plans to schedule a “booster” PE afterwards. Also we’ll talk at that time about the next course of action (IVIG probably – my glucose test indicated diabetic so steroids are now an unpreffered treatment that will require hospitalization if we go that route). I have an appointment with an endochonologist to follow up on the glucose test…I’m not sure I believe the diabetic diagnosis…


    • Anonymous
      August 25, 2008 at 6:47 pm

      Well this is wonderful news! I am so happy for you and glad your treatments are starting to work. I am glad you recieved treatment for yours and will keep you in my prayers and hope you have a fast recovery.
      Was wondering where you disappeared but am glad you were able to go on the cruise. Sorry you had a bad day that day but just happy that you are noticing a difference.
      I’m still on a waiting list and am praying that they treat me soon. Begging for it too! 😀 I guess I was born with bad luck huh? LOL!
      Keep getting better and get well soon! Hugs

    • Anonymous
      September 3, 2008 at 11:22 pm


      I was diagnosed with CIDP in Sep. of 2003. My initial bout was very severe ending in a 10 month decline in motor function until I was a complete quad on a ventilator. About 20 months later I was dx with B-12 deficiency along with my CIDP. We thought at the time I was having a relapse from my CIDP, but after testing came to the conclusion that it was most likely from the B-12 defficiency. My symptoms included tingling in hands and feet and extreme weakness causing me to have to use a walker. Because I have CIDP the doctors are very quick to blame it for any health problems I have and mine went untreated until I had to be hospitalized for it. Since then I recieved B-12 injections 1x every 4 weeks for 3 years. Eight months ago my blood tests showed that my B-12 levels were doing so well that the injections were no longer necessary, and my levels are still good to this day.

      Take Care,

    • September 4, 2008 at 12:48 pm

      I felt really crummy yesterday and last night. It has been 3 weeks since my last PE. My sensory function (tingling and numbness in fingers hands, arms and legs) began declining again 6 days ago. My motor function in my fingers began declining again 3 days ago (Monday), but not significantly, yet. Monday night I hardly slept, I had a feeling of fever and heat in my extremities throughout the night. I’ve also felt heat in my knuckles and feet. Last night after exercise my right foot/leg didn’t function as well (felt like I’d pulled a muscle in my calf) and I had small muscle twitching throughout my legs and hands.

      I realized last night that I had not taken my sublingual B-12 since Monday so I downed 4000mg last night and 3000 more this morning. (I also got my B-12 injection a few minutes ago. My sensory tingling is better now than it was last night. (related to the B-12???)

      I reported my decline to the neurologist yesterday and asked for the “booster” PE and it’s supposed to be scheduled for tomorrow morning.

      I go see the neurologist tomorrow afternoon and will discuss additional treatment (press for the IVIG) at that time.

      Lessons learned: the effect of my PEs seem to last ~2 weeks; PE alone isn’t the answer for me; I seem to be able to feel the onset of the antibody flare up of the imflamation (fever and heat sensations)

      Thank you for sharing Emily, educating each other through sharing our personal experiences currently seems to be the most effective way to elevate the quality of our DX, treatment and care. [B](We (all of us) have got to find a better way to get “the CIDP message” out to or educate both the medical community and the general public.) 🙁 [/B]

      I will post more Saturday (PE usually wipes me out so I don’t think I will be up to it tomorrow.

      Have a blessed day… 🙂


    • Anonymous
      September 5, 2008 at 6:01 pm

      Hello GaryO,

      When I first began to have symptoms of CIDP, my doctor ordered blood tests, which showed that I have a B12 deficiency, later confirmed to be due to an inability to produce Intrinsic Factor. Back then it was confusing for me to have the confirmed pernicious anemia diagnosis while having more tests done (my EMG results from the beginning were not entirely typically for CIDP and showed axonal damage), and I wonder how common it is to have both conditions.

      By the way, your muscle twitches, formally called fasciculations, are benign for most people but are also common signs of motor nerve problems, and the feeling of a pulled calf muscle sounds like what I felt as I was losing strength in my muscles, though I described it as feeling like the day after a really hard workout. Once the progression of my CIDP stabilized, the twitches and feelings of muscle fatigue began to decrease. The early stages of this illness were very difficult, though, until I began to see some progress and have confidence that the treatment was working.

      Good luck to you,

    • September 8, 2008 at 9:00 am

      I visited with the neurologist last Friday afternoon and had a “booster” plasma exchange. The PE didn’t wipe me out as much as the initial PE series, thanks be to God.

      The neurologist was very encouraged by my response to the first series of plasma exchanges saying he would have been pleased with a “factor of 1 improvement”, but my actual was a “factor of 2”. It had been 3 weeks since the first series of plasma exchanges had completed. The improvements continued for about 2 weeks after the initial PE series, but I had started to regress during the third week (last week), so the neurologist didn’t even see me in my best condition. 😀

      The blood center doctor said that typically 2-3 weeks is the initial duration of the plasma exchange effect, but that the duration of the effects typically gets longer. So we hope to extend the improvement cycle to 3+ weeks.

      So unless my improvement cycle gets shorter or I have a set back … the neurologist plan is to [B][U]continue treating with plasma exchanges alone [/U][/B]and prescribed 2 plasma exchanges on consecutive days every three weeks for the next 4-6 months. :confused:

      We discussed IVIG, but the neurologist was so encourage by my response and progress with PE alone that he recommended holding off for now.

      I would like to hear responses as to anyone else’s experiences with PE alone and your advice/wisdom on PE alone success for CIDP and the plan of holding off on IVIG (especially those of you who are being treated at Johns Hopkins for their neurological renown).

      I am also undergoing physical therapy and it is scheduled every Wednesday and Friday morning from 7:00am until 8:00am. The PT consists of a short stationary bicycle warm up, a mild workout with leg weight machines, balance, moving a towel on the floor with my foot, and squeezing a clay putty and grip device.

      I am scheduled to see an endocrinologist for my diabetes diagnosis. My glucose tolerance numbers were not significantly out of normal range (104 versus 100), so I’m hopeful we will find out that this diagnosis is incorrect.

      Thanks for all your prayers, advice and encouragement as I continue to battle this CIDP.

      Romans 8:18


    • Anonymous
      September 8, 2008 at 9:19 am

      Hi Gary! Bless your heart! Sounds like you have been having a hard time these past few weeks and I hope that the PE starts helping you soon. I have the B-12 problem too and can tell when I need my shots. I get them every two weeks instead of monthly because mine wear out so quickly. Plus take the pills too. Funny but after that B-12 shot, I always get a spurt of energy. Does not last long but I seem to notice that one small spurt of energy.
      Hope your week this week gets to be a much better one for you!
      I agree! They need to let the public know more about this stuff! That is how I feel too at times. I get that hot feverish feeling. I just wished they had 1 good miracle pill that we could all take and it would instantly cure us! Hugs Gary! Will keep you in my prayers today!

    • Anonymous
      September 8, 2008 at 11:22 am

      Of course this thread is about B-12 & CIDP, but I wonder how many CIDP folks also lack the B-12 Intrinsic Factor and/or get B-12 shots? Also, our doc has prescribed IVIG for 3 years now but not mentioned PE that I recall. Does one work better than the other?

      The IVIG helped restore some loss at first but now just slows the decline. Is that pretty much like PE?

    • September 17, 2008 at 12:27 pm

      [B]1st things 1st.[/B] [B]Ike Update:[/B] We survived Ike quite well considering (Thanks and Praise to God). Our home was spared. We have a section of fence down and a few young trees that will need to be straightened up again. We are still without electrical power, but have water and gas. We ate our soup by lantern light last night on the patio. The Lord blessed us with a cool front and it was 63 degrees last night so we slept comfortably. Thanks for all the prayers, concerns and thoughts for us. The immediate coastal area has been devestated. Keep them in your thoughts and prayers.

      [B]Plasma Exchange update:[/B] The effects of the booster PE lasted about 8 days. I had a PE yesterday and have another one scheduled for this afternoon. My treatment regimine is: 2 back to back PEs every three weeks.
      Didn’t see much additional improvement from the booster PE (maybe some improvement in my calf extension physical therapy), but didn’t regress much either. The first symptoms I seem to have as the PE wears off is sensory degeneration in fingers arms and feet and an inflamatory “heat” in my knuckles and feet (if that makes sense). My right foot drop gets a little worse as well.

      The sensory issues and my overall strength seems to get better very quickly after the PE.

      I suspect “OldLincoln” is correct that loss of intrinsic factor is an issue a lot of us face. I’m convinced that either the virus or the antibodies that caused my CIDP destroyed my ability to produce intrinsic factor as well and so intramuscular B-12 injections are critical to me to get the B-12 for myelin repair to take place.


    • Anonymous
      September 17, 2008 at 5:55 pm

      Hi Gary! I think this is what happened to me too! Was diagnosed with a B-12problem by 1 neuro but I had neuropathy before the diagnoses. She seemed to think that was my problem all along and the long term prednisone because of Lupus ate the stomach lining causing the B-12 issue. Then my neuropathy got worse getting CIDP diagnoses. Now they see the thyroid problem. But I pray this thyroid problem is the issue here and nothing else coming up. We shall see! Hate to hear the news Gary and pray they figure out what is causing the problem! Have you ever been tested for Celiac Sprue. Sometimes that can cause CIDP and a B-12 issue. Certainly worth checking into! Hugs my friend and glad to see you back online. Thought about you during Ike and hope you did not get it to bad! Hugs

    • October 3, 2008 at 10:03 am

      [B]Psalm 103:1-3[/B]
      [B]1 Praise the LORD, O my soul;
      all my inmost being, praise his holy name.[/B]
      2 Praise the LORD, O my soul,
      and forget not all his benefits-

      3 who forgives all your sins
      [B]and heals all your diseases[/B],

      I think it’s time for an update:

      I underwent a plasma exchange yesterday and will do another this afternoon. It had been 16 day between PE’s, so the time is increasing. 🙂

      I started feeling the burning in my feet Tuesday evening and Wednesday my the bottoms of my feet felt more swollen, my hands were hot and I felt like I had a fever. Then the tingling and numbness returned to my fingers.

      I was really bummed out when the burning returened 🙁 when the burning began. I had felt so good and made such progress that I had started letting the “remission” idea into my head (unrealistic on my part, but I was hopeful and I’m an optimist).

      I’m still hopeful to extend the improvement cycle to 3+ weeks. And I’m thankful and want to give praise to God for the treatments and my improvement’s.

      The physical therapist is impressed with the progress I have made from visit to visit and has added in several more exercises and increased the resistance and weights.

      I still warm up on the stationary bicycle, do leg presses, curls and toe flex, balance stuff, stair steppers, therapy band exercises for my feet and ankles and squeezing a clay putty and grip device. Now they’ve added in walking forward and back and side to side with a bungie cord around my waist. It really targets specific muscles and I sure do feel it.

      Thanks still for all your prayers, advice and encouragement.


    • October 3, 2008 at 10:15 am

      By the Way … my neurologist recommended I get innoculated for [B]Flu, Pneumonia, and Shingles[/B].

      I’m [B]really [/B]reluctant to get the vaccines. From what I’ve read here on the Forum, the “nay” postings are ahead by about 10:1. I have a friend whose mother was given the flu vaccine after remission from GBS and she died. She vehemently advises not to take the vaccine. She even suspects (as do some of you) that a flu vaccination contributed or caused her GBS in the first place. That doesn’t make me feel very confident.

      What I don’t have a good feel for is whether the postings here advising against vaccinations are personal opinions or the docs recommendations.

      I’d like to run a poll (no, not on the US presidential election) …

      Vaccinations: Doctor advises vaccinations
      Yes No
      Vaccinations: CIDP (or GBS) patient advises vaccinations
      Yes No

      Would covet hearing your responses and advise …


    • Anonymous
      October 3, 2008 at 7:43 pm

      My Public health nurse advised no Flu shot. I would not take the chance of risking getting GBS again so I personally will not get one and I advise others to think about the risks before they make a decision.

    • Anonymous
      October 3, 2008 at 8:35 pm

      My neurologist, my rehabilitation Dr., my family Dr.and my cardiologist all have told me no flu shots.

    • Anonymous
      October 7, 2008 at 4:23 am

      I think is all about risks. In my case I was in the hospital for two month, nearly to loose one lung. I goy staphylococus aeurus pnemonia. So I have no choice, I need to flu shot every year. Besides my neuro, who is a master inmmunologist told to get vaccines, specially if I´m at risk.
      Best regards, Pablo,

    • Anonymous
      October 7, 2008 at 4:59 pm

      Hi Gary-My neurologist said no to flu shots, pneumonia, and shingles vaccinations.

    • Anonymous
      October 7, 2008 at 6:59 pm

      Hi Gary! I have to say no also. I had the Flu shot a few years back and got sick as a dog afterwards. So now I no longer trust them. So I agree with most of the rest.
      Wishing you good luck on your recovery process and hope things start getting better for you. Sure is a longterm thing here and hope the treatment starts to improve for you! So I will keep you in my prayers.

    • October 27, 2008 at 9:31 pm

      1st of all, thank you all for your input on immunizations. I have not been immunized to date. I return to the neurologist on 11/5 so we’ll see what he has to say about my decision then…

      My PE treatments are going well and are effective. I have regained a lot of motor control, sensory, and strength in both hands and feet. There have been very limited times when my walking gait feels normal and I’ve even sort of jogged (about 5 feet). Woohoo! My “ring” toes and the pads of my feet around the toes feel the worst now. I do have movement in my toes though and my ankles are moving well and a lot stronger.

      The bad news is that I am supposed to go 3 weeks between plasma exchanges and to date the longest I’ve made it before “feeling” I need another treatment is 15 days.

      “Feeling I need another treatment” means I feel heat “inflammation” in my feet and fingers and I feel the “pins and needles” and numbness returning in my fingers, the palm along the outside by my little fingers and a surface numbness in my lower legs up to the inside of my knees. I also have had a low grade headache and felt kind of feverish. When I get to that point I call the blood center and schedule another round of PEs. (I get back to back PEs on consecutive days.)

      However, by doing so I am staying on top of my CIDP. I am removing the bad antibodies and my myelin is repairing faster than the bad antibodies can do more damage. So, I don’t regress much and my health is overall improving day by day and week by week. Those closest to me notice the improvement and comment on it. And the physical therapists seem to be amazed every visit (I go twice a week).

      People ask if I am getting over CIDP. I say, “no there is no cure. It is going to be a life long battle unless God intervenes.” And then I ask for their prayers.

      I apologize if this is too verbose. And I sometimes wonder if my “story” is beneficial to anyone. But I feel strongly that others who have shared their stories have benefitted me and I feel lead to do what I can as well.

      And since this thread has so many “hits”, I will continue to keep posting.

      May our God richly bless you all …


    • Anonymous
      October 27, 2008 at 10:09 pm

      Hi Gary! I hope this therapy works for you and we see you getting well again. I feel so bad for you right now and I pray that God answers your prayers and makes you well again.
      You certainly diserve to get better! Because you are a very good teacher with alot of knowledge! I admire your postings and certainly enjoy your willingness to share! Hugs my friend! Get well soon!
      Linda H

    • Anonymous
      October 27, 2008 at 11:40 pm

      Gary, although we know you will never “get well” as there is no cure, I pray that you will “be well”. I pray that God gives the strength and power to move mountains as you journey through life! If sharing your story helps even one person, that is that not God’s gift? Keep sharing.

      God’s grace and blessings…..

    • October 28, 2008 at 8:09 am

      Linda, you have such a sweet heart. And thank you for your kind words. Are you sleeping better these days? I send hugs and prayers for improving health your way as well.

      Canada Jan, [B][U]you [/U][/B]take my breath away…

      In Christ,


    • Anonymous
      October 28, 2008 at 5:14 pm

      Gary, I am really glad you have been posting…..I thought when I got out of the hospital a couple weeks ago that I had ” two many hands stirring the pot”; since I was discharged( by the way, Gary, you did a survey on vaccines), there was a whole page about flu vaccine I had to read and sign, and I refused, stating my neuro told me don’t ever get them. The nurse put up a fuss, go figure, but also on that form it was in print that one contraindication for the flu vaccine is Guillain-Barre. Interesting. I still refused and signed my name.
      Getting back to that pot, I had suddenly found myself with a hospital internist who ordered, among other things, B12 injections, which my gp had to order a Rx for, plus my two neurologists, one is still listed as “consultant”.
      I gave myself B12 injections daily X 4 days, then weekly X 4 then monthly. I haven’t really asked why yet, but read your thread from beginning to end, hoping to find an answer. 2 weeks prior to the hospital, I had a B12 lab and it was in normal range. Other than thinking I have a lack of intrinsic factor, I know I am anemic, but have been trying to get my body and mind back to normal, then I’ll ask my gp or consulting neuro in a couple weeks about why the B12. My regular neuro and the internist are out of the pic now, so that’s 2 less “hands in the pot”. Being really confused for a week and flat on my back in a hospital 3 days because of a med allergy is really scary. Haven’t been reading or posting much lately, but wanted to tell you, Gary, that maybe I am one, so far, that you have helped. God Bless…………Emma

    • Anonymous
      October 28, 2008 at 6:06 pm

      Thank-you Gary! Been sleeping really fantastic ever since I had my surgery and hope I stay this way. Nice to get sleep again!
      So Emma! I see you too have a B-12 Intrinsic Factor showed positive. They do the shots in 5 days then 1 each week to bring your B-12 levels up to a high amount in your blood stream. Then they taper to either once a month or twice a month. I have to take them 2 times a month.
      Just want to let you know that if you have a B-12 problem.. which is a malabsorption problem in the stomach. You may want to add Vitamin D also to your diet. I now have Vitamin D defiency also. In fact I take One A Day Multi Vitamins for Women now and ever since taking them, I feel a little better! Hope you feel better soon!
      And Gary! I’m not going to stop praying for you! We need you around to keep those prayers going for us! Hugs
      Linda H

    • Anonymous
      October 28, 2008 at 11:41 pm

      Gary, thank you for your most kind remarks! It isn’t hard to share faith with those who are sincere in their beliefs and I know that you are. The challenge comes when we need to “move those mountains” when the doubters enter the playing field! I then truly have to rely on God to put the right words in my mouth!!! Really necessary so that I don’t end up with my foot in it instead:D !

      Take care and keep posting. I love reading your story and love your sense of humour! If and when (and it will be when) I next make it to Texas, if I am near where you are I would love to meet you in person! God’s grace and blessings.

    • Anonymous
      November 1, 2008 at 11:42 pm

      [COLOR=black]Hello Gary,[/COLOR]

      [COLOR=black]I can’t remember, and I confess that I did not take the time to look back through the old posts, but is plasma exchange (PE) your only treatment? I ask because it is not uncommon to need plasma exchange every two weeks, as you are experiencing. When we were trying PE and CellCept (CellCept did not work for me), I was able to slowly increase the interval from about 17 days to 19 days, but I was feeling poorly the last four days. The one time I tried to push the interval to 21 days, I ended up in the hospital.[/COLOR]

      [COLOR=black]I would push to have the PE more often, if you can, so that your nerves can increase their myelination. Still, I think having PE so often should be a short-term solution. Even my very generous employer was starting to express concern about the frequency of my PE. If you don’t manage to get to a longer interval, I would suggest you consider a combination therapy. [/COLOR]

      [COLOR=black]My combination therapy works reasonably well for me. It consists of the following:[/COLOR]
      [*][COLOR=black]azathioprine at between 2.33 and 2.5 mg/kg/day (depends on my weight)[/COLOR]
      [*][COLOR=black]a slowly tapering dose of prednisone, now at 0.9 mg/kg once a week[/COLOR]
      [*][COLOR=black]a six-week cycle of PE, by which I mean I have PE on Monday, Wednesday, and Friday, with a 1.2 volume exchange, and the next round starting 6 Mondays hence.[/COLOR][/LIST][COLOR=black]We are still adjusting doses, with the goal of keeping the PE at a 6-week cycle and the prednisone as low as practical. My desired goal is 0.6 mg/kg once a week of prednisone and PE on an 8-week cycle, but if I had to stay where I am or even up the prednisone some, I would be reasonably content. Yes, prednisone does have nasty side effects (I just completed my cataract surgeries), but I like being able to walk and work, so I put up with them.[/COLOR]

      [COLOR=black]Do you have good enough veins that you don’t need a catheter? If you have a catheter, I have some practical tips on living with one. I have had mine nearly three years, with only a few problems. Let me know and I will spell out the tips again.[/COLOR]

      [COLOR=black]We might see a cure in our lifetime, or at least something to send the disease into long-term remission, but we might not. I am living as if I will have it for the rest of my life, unless God intervenes. I know that He can heal me, but that He might not, and in fact probably will not. Devine healing is not an everyday occurrence, else it would not be a miracle. Unlike some, I don’t find lack of healing cruel or evidence that God is somehow missing. Instead, I find it a useful reminder that I deserve nothing from God except His enmity, and that but for His grace, I would be damned immediately. And in the long run, I will be healed.[/COLOR]


    • November 3, 2008 at 12:03 pm

      Mark, thanks for the response. You and I share the same beliefs/views. I know what I deserve and where I stand. I’m blessed!

      Yes plasmapheresis is my only treatment currently. The maximum time I’ve been able to go between PE’s is 14 days; my goal is 21 days. The Houston Methodist Hospital blood center doctor (through experience) thinks we’ll slowly be able to get to 21 days and maybe longer.

      My neurologist has mentioned azathioprine. I didn’t much like the possible side effects. Sounds like you’re doing well on it though.

      The neurologist is reluctant to use steroids (my glucose tolerance test was borderline) and diabetes and steroids don’t mix well.

      I see my neurologist Wednesday. This will be the 1st visit since I’ve been on the PE protocol. As you know PEs are very expensive. I have a max lifetime cap on my insurance with my employer. So there is an ultimate limit on how many PEs can have. 🙁

      I am pleased with my myelination, motor function and sensory recovery. This last week though the CIDP hit me pretty hard and surprisingly quickly (to me) on Wednesday. The foot drop on my right foot came back in a morning.

      I had PE on Thursday and Friday and just started feeling results on Sunday. I was pretty fatigued through the weekend. I did make it through my full exercise routine Sunday afternoon after Church but it wiped me out.

      And this morning things are again progressing nicely and I was able to make it through Physical Therapy and 20 hard minutes on the elliptical machine and I’m not too exhausted.

      I’m going to print out your response and take it with me for my visit with the neuro. Sounds like our neuros have similar philosophies.

      Please keep in touch.


    • November 10, 2008 at 10:36 am

      I visited with my neurologist Friday 11/7/08. He was very pleased/impressed with my recovery. My motor function has recovered nicely in hands, fingers, feet and leg muscles (he even asked if I had played a round of golf since I had seen him last). My toes have recovered some function, but lag behind everything else. I can move them and even stand on “tiptoe”, but my toes themselves are weak. My reflex response was quite better, but only when I did exercise. My walking is almost normal now when I keep a normal gait. My foot drop is only noticable when I have walked enough to fatigue my muscles or if I walk quickly or with a big stride. I have much to be thankful for and give a lot of praise for my recovery. 🙂

      The neurologist is still pressing for immunization against flu, pneumoia, and shingles. I am finally relenting today and will be taking the inactive flu vaccine. I don’t feel entirely comfortable with it though… 😡

      The neurologist also wants to put me on an immuno suppresant, citing the frequency of my PEs, PE risks, and PE costs. My philosophy has been “don’t mess with success”, but I went through an onslaught of CIDP this weekend and I think it was a message to me that immuno suppresants are a wise course of action. :confused:

      My body seems to be producing the “bad” antibodies on a cycle anywhere from 7-13 days and doesn’t seem to be even thinking about “spontaneous remission”. So it seems to make sense to “help” the remission process or to decrease the frequency of antibody production. He gave me the name of two immuno suppresants to consider (aziothioprine and [B][COLOR=”Red”]mycophelolate[/COLOR][/B]). He wants me to contact him in a month to talk over the +/- of each and decide which way to go next. The plan is to begin the immuno suppresants after the innoculations (sometime around the first of 2009). 🙁

      I plan to post again in a few days after I’ve had the flu innoculation.

      I’m glad my God is bigger than all of this…


    • Anonymous
      November 10, 2008 at 4:05 pm

      Hi Gary, My neurologist put me on axiothioprine when he first diagnosed me in 2000. My dosage has been adjusted through the years based on my white blood count, so have bloodwork every 3 months, minimum, but I have tolerated that well.
      As for me and CIDP, just when I think things are so much better, it rears its ugly head and something else is worse again. Faith, family, and friends in that order.
      You are right. Our God is bigger than all this.

    • Anonymous
      November 27, 2008 at 11:07 pm

      Gary, I was diagnosed with CIDP in 2003 and started IvIg teatments. My Neuro also started B-12 injections at that time. He said that the B-12 assisted in nerve repair and should be used with the IvIG infusions. I administer 2cc of B-12 every 15 days. My IvIG infusions are now given every 60 to 75 days. There is an improvement in my overall recovery and I am able to work doing most of what is required of me. I’m now 67 and farm and ranch, which requires some physical labor. Good balance is lacking but I’m much better. In addition to that I also inject 1/2 cc of testostrone once a week. So, with the trust I have in my Doc. I would suggest you try the B-12 also.

      Panhandle of Texas

      [QUOTE=GaryO Houston]I was recently diagnosed with “B-12 deficiency” at the Baylor College of Medicine in Houston. My initial diagnosis (from the EMG and nerve conduction) was CIDP. Blood tests confirmed the “B-12 deficiency” diagnosis. My treatment is intramuscular B-12 injections once every three months. I have had three injections so far. I was supposed to have seen some improvement weeks ago, but my sensory and motor neuropathy continues to decline.

      The question I wanted to post is: Has anyone with CIDP ever been diagnosed as “B-12 deficient” and then later had it turn out to be CIDP?

      Since B-12 doesn’t seem to be doing any good, I’m wondering if B-12 deficiency is a symptom and not the root problem.

      Thanks, Gary[/QUOTE]

    • Anonymous
      November 29, 2008 at 4:04 pm

      Gary, I’ll be heading over to Methodist Hospital shortly after the beginning of the year for my first round of PE. Can you provide some information, based on your experiences there, to date?

      Do they use two needles…one in each arm? Have you been able to use venous access, or do you use a catheter? What’s the typical length of time for a PE treatment? Are you able to drive yourself to and from the hospital on the days of your treatments? Are you still experiencing a drop in blood pressure during the treatments?

      Lastly, what do you do when nature calls? I had planned to super-hydrate myself for a few days before treatments begin, to pop up my veins, but I’ve been wondering about what to do when I need to urinate. I also take a daily dose of Triamterene/Hydrochlorothazide, which is a diuretic combination, to hold down my blood pressure. I suppose I could wait until after the PE to take my daily dose, but I’m still concerned about the effects of the hydration.

      I’m sorry to be asking so many questions, but I am a bit apprehensive about the PE process. Any information and impressions you can provide will be appreciated.

    • Anonymous
      November 30, 2008 at 12:28 am

      Hello Rod,

      If you have good venous access, they will use a vein in each arm. However, you need good access: they typically use 17 gauge needles, which are quite large. If your access is not so good, you would need a catheter. For the first round of treatments, a temporary one is fine. If plasmapheresis works well, though, it is worth getting a long-term one. However, a long-term catheter requires a stringent commitment to caring for it. If you make that commitment, though, it is possible to have one with no serious clotting and no infection for years: I have had mine almost three years with no significant problems.

      How long the treatment lasts depends on how big you are. I am a fat man and mine last 2.5 hours. Because I generally have blood tests done before and to allow time for some problems, I plan on being at the hospital for 4 hours. If your blood pressure does not drop, you should be able to drive home.

      One you are hooked up to the machine, you are pretty much stuck there. That is what urinals and bedpans are for, sorry to say. Still the hydration is helpful, and the minor embarrassment of asking for a urinal is worth the avoidance of blood pressure problems. On the triamterene/hydrochlorothazide, you might consult with your doctor about stopping it while doing the plasmapheresis. Doing so could help avoid some of the blood pressure issues many of us face.

      Godspeed in your treatment.

    • Anonymous
      November 30, 2008 at 4:13 pm

      [QUOTE=MarkEns]Hello Rod,

      If you have good venous access, they will use a vein in each arm. However, you need good access: they typically use 17 gauge needles, which are quite large. If your access is not so good, you would need a catheter. For the first round of treatments, a temporary one is fine. If plasmapheresis works well, though, it is worth getting a long-term one. However, a long-term catheter requires a stringent commitment to caring for it. If you make that commitment, though, it is possible to have one with no serious clotting and no infection for years: I have had mine almost three years with no significant problems.

      How long the treatment lasts depends on how big you are. I am a fat man and mine last 2.5 hours. Because I generally have blood tests done before and to allow time for some problems, I plan on being at the hospital for 4 hours. If your blood pressure does not drop, you should be able to drive home.

      One you are hooked up to the machine, you are pretty much stuck there. That is what urinals and bedpans are for, sorry to say. Still the hydration is helpful, and the minor embarrassment of asking for a urinal is worth the avoidance of blood pressure problems. On the triamterene/hydrochlorothazide, you might consult with your doctor about stopping it while doing the plasmapheresis. Doing so could help avoid some of the blood pressure issues many of us face.

      Godspeed in your treatment.

      Mark, thanks for the input. I worked in a pharmacy during high-school, so I’m familiar with needle sizes. I agree; a 17 gauge needle is quite large. I’m hoping that my hydrating myself before the PE treatments will be good enough to provide easy venous access. I’ve always been blessed with large veins that are close to the surface. My IVIg treatments are usually administered through veins on the backs of my hands. Considering the size of the PE draw line, they’ll probably want to go with veins in my forearms, if possible.

      I’m 6’2″ and weigh 235, so I suspect that my PE treatments will last at least two hours.

      I’ll ask Dr. Appel about my not taking the Triamterene/HCTZ on the days of the PE treatments. One alternative may be to wait until each treatment is completed and until my blood pressure has been checked before taking the medication.

      I don’t have any problem with my using a urinal, if necessary. I failed to consider that I’ll probably be able to sit up during the treatments.

      Please feel free to jump in again if anything else comes to mind. Your descriptions of your experiences and your advice are most welcome.

    • December 1, 2008 at 9:03 pm

      Rod, Sorry for the delayed response. I haven’t been on in awhile.

      Mark is right on in his response. The blood center at Methodist in Houston does venous. For me they hook up a suction line (large needle) in the crook of my elbow on the left arm and hook up a return line (smaller needle) just above the wrist on my right arm. The right arm I can move. They have televisions for you to watch which makes the time go by quickly.

      I only had the vasovagal (drop in BP) the first time I had a PE and have not had one since. The next few times when I began to feel the possibility of it coming on they would give me a calcium injection into my return line and it would correct it quickly. Now they don’t even give me calcium.

      Hydration is important. Take advantage of the facilities and empty the bladder before you go in. You’ll be in a recliner. Be sure and eat something afterwards and drink something. They will offer you a selection of snacks and drinks. We usually park in Smith Tower and walk over to the Methodist hospital. (It is less expensive than the Methodist parking.)

      I always take my Benicar for hypertension in the evenings and take it the evening before my treatments. I don’t think it impacts the vasovagal response.

      My PEs take between 1.5 to 1.75 hours. I am 6’1″ and weigh 190ish.

      The technicians are very nice: I especially like Sal, Sandra, and Wilma.

      I will be there Friday afternoon for another PE and will tell them to be extra nice to Rod … from Louisanna.

      I will also pray for your treatment to go well and for it to be as effective for you as it is for me… or even better.


    • Anonymous
      December 1, 2008 at 10:28 pm

      Gary, thanks for the response.

      I spoke with Dr. Appel’s secretary today, and she’s going to set up my appointments for Monday, Wednesday, and Friday (Thanks to Mark for the advice) for two successive weeks, beginning on 01/05/09.

      I phoned the Methodist Hospital Blood Center today and spoke with Sal. He was a great source of information. He suggested that I visit the blood center sometime between now and my first scheduled appointment so they could have a look at my veins, to determine if venous access will be possible.

      Sal also suggested that I wait until the PP is completed before taking my daily meds, since the plasma removal will also remove much of the medication that will have made its way into my blood.

      I’ve been parking in the Smith Tower parking garage and taking the crosswalk to West Pavilion for my IVIg treatments. Sal suggested that I park in the same place and just take a different crosswalk to get to the Fondren building.

      Just because I don’t pray as often as I should doesn’t mean that I don’t believe in the power of prayer. Your prayers are welcomed and appreciated.

      Perhaps we’ll be in adjacent recliners sometime in the near future. 🙂

    • Anonymous
      December 2, 2008 at 12:27 am

      Hi Rod and Gary! Gary I was wondering where you were and hope you are doing well! Missed seeing you posting.
      Rod! I too had a nice recliner while being on Rituxan. A TV in the room also. The hospital I go to they put you in an out patient hospital room. But if you have complications then they take you to the Day Hospital and place you on a stretcher. But I had Rituxan treatments and not IVIG.
      I hope everything goes well.
      Gary! Glad to see you back! Missed ya!
      Linda H

    • December 2, 2008 at 11:05 pm

      Thanks Linda. It been busy. I will try to catch up on the forum news in the next few days.

      Quick update for those who have been following…

      I survived my flu innoculation on Monday 11/10 (inactive) with no ill effects. I had back to back PEs again Thursday 11/13 and Friday 11/14. That would have had me going back in on Thanksgiving day so the blood center advised that I should have one PE on Friday 11/21, before I left town for Thanksgiving holiday and another PE on this coming Friday 12/5. Their opinion was that the back to back timing of the PEs is not critical. Seems that they were right. I guess the critical factor is the amount of filtering per volume of blood or body mass.

      The results are that I have felt wonderful since Saturday 11/15. (I have so much to be thankful to God for). 🙂 Yesterday the olfactory “smells” and tinnitus began flaring up again and today my feet began burning and I felt the sensory numbness returning to my arms. 🙁 So it seems it is time for another PE. It will be interesting to see if I can last 3 weeks after the PE this Friday before I need another…

      I still have not made up my mind about the immunosuppresants and am still trying to decide which way to go.

      The next innoculation will be for shingles. I intend to have it next week.

      In Christ,


    • Anonymous
      December 3, 2008 at 8:58 am

      Hi Gary! Sounds like you are having a rough time of this and I will continue to pray for you each day! And am glad to hear from you and your update. Many blessing for you and your family this holiday season! Hugs
      Linda H

    • December 3, 2008 at 11:08 pm

      Rod, I neglected to respond to your Driving Home question … We live an hour away from Houston (60 miles).

      I have driven home a few times after a PE treatment. But mostly (60% of the time) I don’t feel like it. I sometimes get light headed and just feel drained after a PE. Usually I feel good enough to walk to the car. My light headedness and bad feelings usually set in 30 minutes to an hour after the treatment. The light headedness usually passes within a few hours.

      I have noticed that eating the snacks and drinking juice they offer after the treatment helps.

      My wife has always gone with me and usually drives home.

      Again I hope this helps… Gary

    • Anonymous
      December 4, 2008 at 8:04 am

      Same goes here Gary! I have to have someone take me and pick me up. Andy took off last week with me but this week my brother in law took me. An he left and went home then after I was done he picked me up. I get dizzy headed and a headache then get itchy skin. My appetite too is not good either.
      Have to eat mild things and no spicy foods.
      Glad you are back posting! Missed ya in here!

    • December 9, 2008 at 5:05 pm

      I had a PE last Friday afternoon. (The blood center had a stocking for me with an Astro’s Milo Hamilton bobble head in it).

      I did feel better on Saturday. However, the burning sensation in my feet didn’t diminish much and I have felt numbness and weakness returning to my toes, feet, fingers and arms. I also felt the itching sensation for a couple of days afterwards in several locations. The swelling in my lower legs and feet didn’t improve much either.

      Monday afternoon things finally began improving. I worked out during lunch and although somewhat fatigued, I made it through my entire workout. I am feeling even better today and the swelling is down, burning is better, fingers and toes are more responsive.

      I have a new theory forming and want to test it out with the experts (y’all).

      I think I went so long between PEs that I built up more antibodies in my blood and tissues than usual. I think the PE on Friday removed the antibodies (or at least most of them) from my blood stream. However, the antibodies in my tissues still had to run their course before I could see/feel the effects/results. Results (burning, numbness, fatigue all diminish and motor function improvement).

      It makes me wonder what the “life” or half life of these bad antibodies is.

      I know the antibodies causing my CIDP are probably different from others, but has anyone done any work on antibody life cycle duration?


    • December 14, 2008 at 9:44 am

      I have a cold. I started coming down with it Thursday 12/11.

      I was running a 100 degree fever last night 12/13 and my nose is running away. My immune system seems to be kicked up, but I don’t feel like it is effecting my CIDP. My feet were burning yesterday, but even that seems to have died down. My joints were very achy last night as well. I did 30 minutes on the elliptical machine on Friday even though I felt horrible. I took it easy all day yesterday though.

      Typically I start with a head cold and it moves down into my lungs. So I’m really hoping this doesn’t involve my lungs this time. Pneumonia scares me a little with CIDP. I’ve never had pneumonia and I’m supposed to get vaccinated for it.

      I’m scheduled for a PE on Friday 12/19. I think I may try to get back to back PEs on Thursday and Friday to make sure I make it through Christmas without having CIDP issues.


    • Anonymous
      December 14, 2008 at 5:12 pm

      Hi Gary, I have been thinking of you and wondering how you are doing. Sorry to hear you have been under the weather. I had a similar thing two weeks ago and was afraid it would go down to my chest as it usually does. I managed to get past it without it settling into my chest. I pray the same for you.

      I too have been busy and not on here much. Have been travelling for work the last three weeks so haven’t had a lot of time. I have been feeling quite well the last couple months and am praying the lack of pain and tingling is a good sign.

      Just wanted to say hi, thinking and praying for you. May God continue to keep you in the palms of His hands and keep you well through this blessed season.

    • December 18, 2008 at 12:49 pm

      Thank you Jan. Prayers are being answered. And I continue to pray for you as well.

      I am headed back to the Blood Center today for a PE and I will have another tomorrow. I have another scheduled for the 31st (what a way to end 2008). This is similar to the schedule I had for Thanksgiving and it went VERY well. So I’m hopeful this will see me through well into 2009.

      My fingers, feet and toes are getting numb again. They are inflammed, swollen and I have the crawling sensation. The bottom of my feet have never felt completely “normal” since onset of CIDP. My ears are ringing off the chart and I have a headache. It’s time for PE…

      My cold has almost run it’s course. However, I have given it to my wife. I just hope she’s over it by Christmas Eve.

      2008 has been a roller coaster year. I started it out by preparing for a 10K run and barely having the energy to complete the 5K in May. At one point I could barely stand (unsteadily) on two feet, couldn’t button my own shirts and dropped my fork repeatedly at meals. Incompletely diagnosed as B-12 deficient. Positively diagnosed as CIDP. Now I’ve regained most of my lost motor function and sensory.

      And I’ve met some new friends…

      All in all, it has been a blessed year. Thanks be to God.


    • Anonymous
      December 18, 2008 at 10:42 pm


      I was dx with CIDP 5 years ago at the age of 20. Two years later I was dx with a B-12 deficiacy in conjunction to my CIDP. Since they think anything that goes wrong with me is contributed from my CIDP they weren’t looking for the deficiancy and it got to the point that I was so weak I could barely stand and ended up having to get a blood transfusion. For the past 3 years I have recieved injections 1x every 4 weeks.

      Take Care,

    • December 22, 2008 at 8:34 am

      I had the plasma exchange on Friday too. The machine shut down automatically at one point. It seems my platelett count is on the higher end of the normal range and I was plugging up something. They gave me some extra “citrxxx” something and started back up.

      I drove home and we stopped on the way to eat (almost an hour away from the hospital). After dinner (chicken fried steak … yumo) I almost passed out sitting in my chair. I had to lay down on the floor and elevate my feet. My wife said that my skin was very clammy and white. I was light headed Saturday morning too.

      I haven’t felt the effects of the plasma exchange yet. My hands have continued to get weaker throughout the weekend and my foot drop is noticeably returning.

      Either I took too long between PEs or the cold I had is causing my immune system to go into overdrive (maybe a combination of both). I hope the PE kicks in soon going into Christmas.

      I hope you all have a Merry Christmas and a Blessed 2009. May God grant you peace.


    • Anonymous
      December 26, 2008 at 2:09 pm

      Hello Gary,

      The anticoagulant used in plasmapheresis is either heparin or ACD, which is a mixture of citric acid, sodium citrate, dextrose, and water. Your center is using the citrate type, based on what you wrote. The citrate type works by binding the free calcium in your blood. This calcium is required at several steps in the coagulation process, so removing the calcium prevents coagulation. That is why there is an infusion pump with a bag of calcium gluconate attached to the return line; you need to replace the calcium.

      I can only guess why your blood coagulated in the machine, but none of my guesses are at all likely. As far as I know, this problem should not have happened. You should discuss this problem with both your neurologist and the supervisor of the center.

      Do you get blood tests before your treatments? They should know what your calcium level is before you start. If your blood tests are reasonably stable, you don’t need the tests before every treatment, but you should get one at the start of each round (by round, I mean the 3 to 5 treatments every other day)

      It sounds like your blood pressure drop was delayed a fair bit after your treatment. Is that right? You should report this event to your doctor, so that it can be put in your chart. The center can take steps next time to minimize the blood pressure drop. These steps include making sure you are well hydrated before you leave, increasing the total albumin quantity, and doing the exchange more slowly.

      How many days are you now at between rounds (as defined above). If you are still at around 2 to 3 weeks, I would suggest that you and your neurologist might consider a combination therapy. Here’s why. My neurologist found a textbook reference (forgotten which one) suggesting that the effects of plasma exchange last one to two weeks, with increasing symptoms thereafter. When I was doing PE and CellCept (CellCept did not have a significant effect), I found this was true. We knew from my initial treatments that prednisone alone did not do the job, but that PE + prednisone gave good results. With azathioprine added to PE + prednisone, I still get good results and take less than half the prednisone I used to.

      I am not pushing prednisone, though. It has, as you know, many nasty side effects. I decided to trade nasty side effects for overall better quality of life. Suffering through cataracts and dealing with the inability to focus, for example, is still better than not working. Whether that is the appropriate trade-off for you is your decision.

      Godspeed in your continued treatment.

    • Anonymous
      December 28, 2008 at 5:23 pm

      Gary, I’m scheduled for PP at Methodist on 01/05, 01/07,01/09,01/12, and 01/14. All my appointments are at 10:00. Is there any chance that you’ll be there at the same time. I’d love to have an opportunity to meet you.

    • January 5, 2009 at 8:39 am

      Hello and thank you Mark and Rod,

      Rod I would enjoy meeting you as well. I am in the blood center for a PE on Friday 1/9 and sent you a private message attempting to set something up…

      Mark, I agree that I should not have experienced the coagulation during the procedure nor the incident afterwards. So I do plan to relay this experience to the doctor at the Blood Center, which is relayed to the neurologist. And I will talk over the incident and combination treatments with the neurologist during my next visit. FYI … I have received calcium injections into the PE system in the past, but not recently. The calcium injections always have corrected the symptoms very quickly (they also produce a weird warming sensation).

      I have asked before if the blood center tests my blood (I was inquiring about my B12 levels). I think I remember the response was that they test my blood every plasma exchange, but only test the B-12 levels every couple of months. Unless they have an onstream analyzer, they don’t run tests and get results before the treatments. I think they just draw a blood sample and send it for tests and record the results. I will ask this Thursday when I return for the next round of PEs.

      A treatment “round” for me means 2 PE treatments lasting about 1.75 hours each on consecutive days. I will have a round on a Thursday and Friday and then 3 weeks later have another round on a Thursday and Friday.

      Yes you are correct, the light headedness (blood pressure drop?) was about 2 hours after my treatment. I always drink juice after the treatment to rehydrate before I leave. I will talk over with the blood center doc the albumin quantity and slowing down the exchange. I will also ask for calcium if I start feeling the need. (I can “feel” the symptoms coming on … My tongue starts to feel fuzzy and I get a strange taste in my mouth).

      My neurologist is recommending a combination therapy of immunosuppresants and PE. I am leaning towards azathioprine added to my PE regimen. My neurologist is not recommending Steroids at this time due to my glucose tolerance test results. I would really like to read your neurologist’s textbook reference regarding the plasma exchange effects last one to two weeks and symptom return if you can locate it.

      [B][COLOR=”Blue”]By the way, as a quick update, I had the pneumonia vaccine on 12/31 (what a new year’s eve present), other than feeling a little run down and feverish I didn’t have any bad reaction to the vaccine. Next is the shingles vaccine and then I’m done for awhile. I played golf last week for the 1st time since coming down with CIDP. Other than a couple of times on the 1st tee when I shifted my weight during the practice swing and thought I might fall over and a couple of times my grip felt like I might lose the club, I was amazed (and thrilled) at how well it went. I was fatigued by the 18th, but I made it through the whole round. I had to birdie 18 (#2 handicap hole) to shoot a 92 (I used to have a single digit handicap … now my handicap is numb fingers … LOL), but I really had a good time. My fingers and feet started burning yesterday and the numbness is returning to my fingers today. It is time for my next round of PE’s … [/COLOR][/B]

      Again thanks Mark for your recommendations and for listening. Rod, looking forward to getting together.

      Godspeed to you both as well in your continued treatment.

      And may God richly bless you and your families in 2009,


    • Anonymous
      January 5, 2009 at 8:28 pm

      Hi Gary. It’s good to see you posting again. I’ll respond to your PM when I finish this post.

      I had my first PE treatment today, with minimal problems. I say minimal because I did have some slight nausea about an hour after the treatment. Fortunately, we were near the Anahuac exit when the nausea hit, so we just pulled in to Gator Junction and I overpowered the nausea with one of their delicious BBQ sandwiches. 😀 I had taken some juice immediately after the treatment, but I declined their offer of peanut butter crackers. Upon reflection, I should have accepted the crackers. I won’t make that mistake again.

      Other than the nausea, the treatment was uneventful. I waited until after the treatment to take my daily blood pressure medication, so that may have helped me to avoid low blood pressure.

      Some things for which I am thankful:
      [*]The caring attitude and professionalism of the folks in the Blood Center at Methodist Hospital.
      [*]The local anesthetics before the big sticks. The hole in that 17 gauge needle on the draw line looked large enough to put my finger through.
      [*]The blood warmer. I was expecting to be cold from the re infusion of the blood/albumin. The absence of coldness was a pleasant surprise.[/LIST]I’ll be back Wednesday and Thursday of this week, and Monday, Wednesday, and Thursday of next week. The folks at the Blood Center are telling me not to expect any immediate improvement, but…….there’s always hope.

    • Anonymous
      January 6, 2009 at 9:25 am

      Hi Gary! I am still doing alot of praying for you. Hope things get better for you soon. Sounds like you had a bad month in December but maybe 2009 will be much better for us all! We all need a good break from this stuff! I hope everyone of us in here gets well this year. Thats my New Years Hope and Dreams! Hugs

    • January 7, 2009 at 8:19 am

      Thank you Linda, I am praying for you as well and second your motion for a better 2009 and relief from CIDP … my body is telling me it is time for my PEs tomorrow and Friday. I hope by Saturday afternoon these antibodies are on the run again.

      We are going on a Caribbean cruise January 19th with our kids. Our Chiropractor son is conducting a seminar on the ship. Mainly I plan on baking some of these antibodies out of this body in the warm Caribbean sunshine. I think I will visit the on board “Tavern” and get a smoothie with an umbrella too (wish my Forum Tavern buddies could be there with us). While I’m down there I will try to send some warm tropical sunshine northward for our Northern and Canadian brothers and sisters. 😉 We are so looking forward to spending time with our kids.

      Rod’s comment on the blood center’s mantra “a stick and a sting” made me smile. I’ve heard that expression a lot. When they miss my vein and re-stick me they are always so apologetic. I tell them I don’t mind because the important thing is to get the PE and remove those antibodies (even though I wish they were 100% on the 1st stick). I invision those antibodies being sucked right out and I don’t feel so badly. The worst part of a missed stick is not the re-stick it’s the hematoma and the soreness that follows. But that too passes after a few days. Sorry for rambling this morning; I guess I felt chatty.

      In Christ,


    • Anonymous
      January 7, 2009 at 12:25 pm

      How great for you and the family to be together on a cruise. Relax and enjoy!
      Will be waiting on the warm tropical sunshine to reach Ohio.
      Blessings to all

    • January 8, 2009 at 9:46 am

      I thought it would be interesting to capture the progression of CIDP symptoms as I approach 3 full weeks between PE treatments. I can tell it is time for another PE. I am pleased it has been 3 weeks since my last PE sessions. PEs are expensive, time consuming, and invasive (but thank God they are available and effective for me).

      I have been noticing the burning and numbness in my feet and fingers since last Sunday (two weeks and two days after my last PE). The burning and numbness has been getting progessive worse daily. I particularly feel it in the evenings (after a long day). Just this morning I have noticed the strange “smells” (olfactory involvement) returning and my tongue has that rough tingly feeling towards the back. The tingling/skin crawling sensation has progressed up my wrists and along my calves. During my workout routine Monday and Wednesday, my muscles were more fatigued and I didn’t quite have the same stamina (but I was able to complete the entire routine both days 😀 ). My calves have been difficult to stretch out the last couple of days. Monday I had a physical therapy session and I have not lost any appreciable strength 😀 .

      Fortunately I do have a PE scheduled this afternoon and tomorrow afternoon which will put the antibodies on the run again. I will again schedule the PEs for 3 weeks hence and see when the symptoms begin to re-appear.

      In Christ as always,


    • Anonymous
      January 9, 2009 at 9:57 am

      Hey Gary! Are they giving you any medications like Gabapentin to help with that numbness and tingling? That would help some with easing the agony of that burning pain. Not sleeping and having that burning mess can really be fatiging. You would be surprised getting a good nights sleep how much better you will feel even with this CIDP. It takes alot of your energy out of you! How many B-12 shots are you getting too! I take 2 times a month instead of every month. That too helps give me energy. I call it my booster shot! And boy do I need them. I have getting IV’s. My veins roll and I bruise easy too so I feel for you there. But I pray the treatments start working and you get better soon.
      Having time with your children sounds great. I just had mine with my children during Christmas and it was so special having. And going on a cruise! You lucky bird! LOL! I hope you have a fantastic time and hope the sun takes those nasty antibodies away making you healed and well again. Will be praying that your trip does a miracle and makes you well! Hugs
      Linda H

    • Anonymous
      January 10, 2009 at 2:07 am

      Hello Gary,

      At my last plasma exchange, I paid closer attention to the tubing, which was a clue on how the anti-coagluation is done. The Cobe Spectra plasmapheresis machine has three tubes that combine right at the withdrawal point. One line delivers saline and a second delivers the anti-coagulant. These mix with the blood as it is being withdrawn down the third line. In other words, the anti-coagulant is mixed with my blood as soon as possible. When my blood returns, a calcium gluconate solution is mixed in just shortly before it enters. It should be easy enough to calculate how fast to infuse the calcium gluconate, to counter-balance the calcium the anti-coagulant binds up. Unless you are having a blood pressure crash or were low on calcium to start, you should not need extra calcium during the procedure, at least not so quickly that you get that warm sensation.

      I have never had my blood pressure drop 2 hours after the procedure. I have had it drop alarmingly during (usually right at the end) and immediately after the procedure, though. I usually have a mild drop at the end, sometimes to the point where they need to give either extra saline or more concentrated albumin. One way to get extra saline is to do what my nurse call a “double rinse-back”. A “rinse-back” is when they rinse the blood out of the machine and back into you. So double just means they do it twice.

      I could not find the reference text I was thinking of, which is [I]Peripheral[/I] [I]Neuropathy[/I], 3rd edition (Saunders, Philadelphia), by P. J. Dyck, P. K. Thomas, J. W. Griffin, et. al. (eds.). However, I did find two other books that had similar information. Their information is from these two papers:[INDENT]Dyck PJ, Daube J, O’Brien P, et. al. “Plasma exchange in chronic inflammatory demyelinating polyradiculoneuropathy” [I]New England Journal of Medicine[/I] 1986; [B]314[/B]:461-463.

      Hahn AF, Bolton CF, Pillay N, et. al. “Plasma-exchange therapy in chronic inflammatory demyelinating polyneuropathy. A double-blind, sham-controlled, cross-over study” [I]Brain[/I] 1996; [B]119[/B]:1055-1066.

      [/INDENT]Hahn’s study was the one with the information about the onset time of symptoms. The study was relatively small, 18 patients, with 15 patients completing the blinded study. Of those 15, 12 had very large improvements. The other three apparently did not. Of the 12, eight relapsed within 7 to 14 days after the last PE. Subsequent PE was effective in reversing the relapse. To increase the time between PE rounds, some form of immunosuppression (prednisone, cyclophosphamide in her case) was needed.

      By the way, I tried CellCept in 2006, for a full five months. It was not sufficiently effective; it perhaps increased the time between PE rounds by 2 or 3 days. I switched to azathioprine and prednisone and continued PE. That combination works for me. A typical dose for mild suppression of azathioprine is 2 mg/kg/day. By upping the dose by about 15%, I appear to have reduced my prednisone need to about 0.8 mg/kg/week with PE every 6 weeks. I am trying to reduce the prednisone to 0 and would agree to a larger dose of azathioprine if it did the job. I would even take the anti-rejection amounts (3 mg/kg/day). Transplant patients take that amount, but typically they take more than one anti-rejection drug, increasing their risk considerably.


    • Anonymous
      January 10, 2009 at 2:03 pm

      [quote=MarkEns]Hello Gary,

      At my last plasma exchange, I paid closer attention to the tubing, which was a clue on how the anti-coagluation is done. The Cobe Spectra plasmapheresis machine has three tubes that combine right at the withdrawal point. One line delivers saline and a second delivers the anti-coagulant. These mix with the blood as it is being withdrawn down the third line. In other words, the anti-coagulant is mixed with my blood as soon as possible. When my blood returns, a calcium gluconate solution is mixed in just shortly before it enters. It should be easy enough to calculate how fast to infuse the calcium gluconate, to counter-balance the calcium the anti-coagulant binds up. Unless you are having a blood pressure crash or were low on calcium to start, you should not need extra calcium during the procedure, at least not so quickly that you get that warm sensation.

      I have never had my blood pressure drop 2 hours after the procedure. I have had it drop alarmingly during (usually right at the end) and immediately after the procedure, though. I usually have a mild drop at the end, sometimes to the point where they need to give either extra saline or more concentrated albumin. One way to get extra saline is to do what my nurse call a “double rinse-back”. A “rinse-back” is when they rinse the blood out of the machine and back into you. So double just means they do it twice.


      Mark, Gary and I are having our plasma exchanges done at the same location. The plasmapheresis machines used there are also Cobe Spectras. During my treatment session yesterday, I was looking at the tubing. The arrangement on the draw line was exactly as you described. The saline and the anti-coagulant were mixed with the blood at the point of withdrawal. I didn’t pay as much attention to the return line, but I believe it was also as you described.

      During my last two treatment sessions, each of which lasted about one hour and forty-five minutes, my blood pressure dropped near the end of the treatments. On Wednesday, I still had about 15 minutes to go, so they stopped the withdrawal and gave me additional saline until I felt better. Yesterday, it didn’t hit me until there was less than five minutes remaining, so I stuck it out. In both cases, the first indication of low blood pressure was increased tingling in my fingers.

      After the treatments, I go directly to the cafeteria and have a good meal. So far, that seems to have prevented any additional problems.

      Thanks for your continued willingness to share your knowledge and your experiences. My anxiety level is much lower when I know what to expect.


    • January 14, 2009 at 8:27 am

      Thanks [B]Mark, Linda and Rod[/B],

      I had the PEs Thursday and Friday and they went well. I discussed my experience with the blood center doc. He has patients who have experience a “delayed” vasovagal response typically 30 minutes to an hour after the exchange. He attributes it to a “fluid shift” and for me ordered an extra 500ml of saline during the rinse cycle and asked that I stick around for an extra 30 minutes after the exchange. I felt a little nausia on the way home, but otherwise felt ok. I only received calcium injections the first 2-3 sessions and seemed to tolerate the PE well without calcuim injections up until the last episode. The next time I have a PE I will ask about the calcium gluconate rate to see if adjusting it might be a good course to take.

      The burning and numbness in my feet and fingers began diminishing Sunday and are improving daily. The strange “smells” (olfactory involvement) are gone and my tongue is back to normal. My muscle fatigue hasn’t improved much and my stamina is still not right. My calves are still difficult to stretch out and are particularly tight in the mornings.

      My eyes were puffy last week and I’ve noticed some stiffness in my finger and knee joints. (Related to CIDP???) :confused:

      [B]Julie[/B], I have also noticed my upper abdomen being a little bloated and remember your posts. Unfortunately I don’t know if it is caused by CIDP or the holidays. I am going to get back on my Sugar Buster diet to see, but it will have to wait until after the cruise… 😀 (I may return to Houston with an even larger but more tanned belly). LOL.

      [B]Linda[/B], thank you for the prayers; I am blessed in that God is answering them and that I have such wonderful buddies who are praying for me. I have been getting B-12 injections once per month now. It has been a while since my last B-12 test and I haven’t seen the results yet. So I don’t know if once per month is sufficient or not. I do know that I feel really good after a B-12 injection.


    • Anonymous
      January 14, 2009 at 7:57 pm

      Hi Gary! So what is actually going on with the tongue! The reason asking is I was doing some research on CIDP back in the summer and found a disease that had something going on with the tongue. Can’t remember what it was called but when you mentioned that along with the B-12 it just reminded me about what I found and it too caused CIDP. But it needed other kinds of treatment!
      Ohh! That B-12 shot my levels are borderline normals. And I am now in the normal range but when I drop to once a month my levels drop again and I feel tired and weak. My doctors felt it best to keep me on two shots a month. I can tell when I am due! I start getting weak again! After I have that shot I end up getting spunky a few days!
      I will pray for you every single day until I hear Gary saying he is well! May God Bless you on the 19th and let you have a fun time! Hugs
      Linda H

    • January 28, 2009 at 1:36 pm

      My last PE was 1/8 and 1/9. I am scheduled for PEs tomorrow and Friday which will make 3 weeks again. (WooHoo!)

      I went on a Caribbean cruise with my family the week of 1/19 and was feeling fatigue in my legs and and arms and even into my shoulders. What I noticed was that the fatigue was worse during my first 10 minutes of my 30 minutes on the elliptical aerobic machine. After 15 minutes I was feeling rather strong again. Also I had slight joint pain and some fatigue in my forearms, elbows and shoulders while lifting weights (curls, lat pull down, and butterfly). After the first set again I felt much better.

      By the end of the cruise Saturday I was feeling stronger, but the fatigue and burning and swelling in my feet and ankles didn’t respond as well this round of treatments.

      I have gone on a diet (after the cruise) and I think it has resolved the swelling in my abdomen (I’ve lost 10 pounds and my belt is one notch to the good side).

      I just spoke with a friend who was a co-worker of mine a few years back. AMAZINGLY he also was diagnosed with CIDP. Gotta Run … will hopefully post more tonight.


    • January 28, 2009 at 9:45 pm

      I’m back…apologies for the interruption.

      It turns out this co-worker started feeling the tingling, numbness, and tightness in the calves while on a foreign assignment. He returned to the states and was vaccinated with Hepititis which caused a very acute response. The diagnosis eventually was CIPD and confirmed through spinal tap.

      What are the odds that two people who worked side by side develop CIDP? I think I need to go out and buy a lottery ticket!

      Rod, I hope you are responding positively to the PE finally.

      Mark, I’m taking your questions to the blood center tomorrow.

      Linda, You and your mother (any all my Forum Family) are still in my prayers.


    • February 5, 2009 at 9:20 am

      I have taken my last innoculation. My neurologist asked me to take the flu, pneumonia, and shingles innoculations. I was innoculated for shingles Tuesday.

      The shingles made me more nervous than the others since the literature the pharmacist gave me talked about “live” vaccines. My arm is still sore where the injection was given, but I feel pretty well. (I have had shingles twice in my adult life).

      I can’t remember if I told y’all I have been taking glutathione for a couple of months. It is supposed to be a natural inflammation fighter. (Sounds like a good thing for Inflammatory disorders). Can’t really tell if it’s helping along with the PE or not…

      The numbness in the tips of my fingers flared up again. My feet are feeling more numb as well. Any my right foot has that “asleep” feeling this morning. (Due to the immune response to the innoculation or because I missed a couple of days of the glutathione, or just my CIDP cycle?) I don’t know, I’m just glad to be done with these innoculations.

      I am scheduled to see the neurologist Friday the 13th where we will discuss immuno-supressants. (If he’s wearing a hockie mask I’m leaving:D ). I’m still leaning towards the Aziothioprine.


    • Anonymous
      February 5, 2009 at 2:01 pm


      My dr sent to me a lady that is involved in selling the glutathione…of course, the seller swears by it. I havent purchased yet b/c I’m uncertain of the risks. There doesnt seem to be any.
      I’d love to know more.

      I hope your symptoms improve soon.


    • February 6, 2009 at 8:08 am

      Thank you Stacey for the well wishes.

      My son is a chiropractor and he recommended glutathione and I get the capsules through him. I asked my neurologist about taking glutathione injections and he said the clinical evidence is that glutathione does not help and so didn’t support the injections. I continue to take the capsules mainly because I want to give my body the best chance to heal that I possibly can. I am not yet convinced I have tied the glutathione in to improvement, but I may be close. I missed a few days recently and the inflammation, burning and tingling returned. Was it because I missed the glutathione or my natural CIDP cycle? I’m going to be more faithful in taking the glutathione and see what the cycle does.

      I will research the web and see what I can find on glutathion this weekend and if I come up with something definitive I will post it.

      I pray that your symptoms will go away and never return.


    • Anonymous
      February 6, 2009 at 11:52 am

      Thanks Gary.

      When I mentioned it to my neuro, he also said there is nothing scientifically proven that it helps. It was my pain mngt dr that told me about it and his thoughts are that it couldnt hurt and may help. My pain dr is very involved in trying to “cure” me. He’s a wonderful man and dr. I wish he could find the “cure” but I’m not holding my breath for it.

      I appreciate your help.


    • Anonymous
      February 7, 2009 at 9:34 pm


      I haven’t been on site for a while but when i saw this question, I HAD to repsond. You mayhave previous read aboutmy situation but was dx’d years ago with B-12 deficiency and was taking shots, pills, drops under the tongue… you name it. They didn’t help. It was only after I had suffered such extreme nerve damage that it had become CIDP, that they realized the real problem. I have a hereditary autoimmune disorder called Celiac Sprue (CS)and had caused the B-12 def. that led to my now progressive CIDP. CS is where your body can not process glutens found in wheat, barley, rye and oats (oats through cross contamination). When i ingest these glutens theycause my bodyto attack my intestines and strip it of the Villa, which is the finger like structures that trap the nutrients from food, for the body to absorb and process them. Since my Villa wwas gone, i was actually malnurished, though not under weight and this caused severe B-12 deficiency.

      I know that is a ton to digest (no pun intended;) ) but if you would like more info on this, please send me a PM and i’ll get back with you. It can be completely debilitating to have B-12 deficiency and potentually life threatening to have undiagnosed CS… It is one of the most misdiagnosed GI disorder in the us. They say as many as 1 in 133 have it but only 10% know it. It is easily treated, simply by sticking to a strict gluten free diet and one your body quits taking them in, it begins to heal and with a dailyB-12 pill i’m doing much better. Good LUCK

    • February 12, 2009 at 9:29 pm

      Thanks for the post Karen; I had never read your story before. They ruled out CS early when they were thinking B-12 deficiency alone was my problem. My B-12 deficiency, it turns out, was borderline. It will be interesting to see what my last blood test shows when I return to the neurologist. I know continuing my injections (1 cc per month) is required to maintain myelin repair. Hope you continue to heal and may God’s richest blessings be with you as well.

      I will see my neurologist tomorrow afternoon. It’s the day I’m supposed to select the immunosuppresant. I will post after my appointment and let y’all know how it goes. There are several questions I have for the neurologist. How careful do I have to be around crowds after I begin the immunosuppresant? What is the continued benefit of physical therapy? I’m not 100% normal by any means. I can’t run, but I’m thinking I might get there again.

      My feet began burning again Tuesday and yesterday was the worst. It’s abating now and not so bad this evening. I still have one week to go until my next PE rounds.

      May God grant you all healing and a great night’s sleep tonight … Gary

    • February 13, 2009 at 9:40 pm

      Back from the neurologist appointment. I have a prescription for Azothioprine. I’m supposed to start with one 50mg pill/day for 2 weeks then go to full dose. I don’t need to be overly cautious about being around people while on it, but I should avoid “seriously ill” folks. I got baseline blood work and will do follow up after the first month on Azothioprine and then every 3-6 months thereafter.

      My last B-12 level was 2000 (upper limit of the test). He advised against “agressive diets” and thought that was causing my light headedness and fatigue. “You’re re-building muscle and need protein. An agressive diet is not a good idea.” He was very pleased with my progress (as am I) and suggested going to 4 weeks between PE after my next round of PE.

      Physical therapy is my call now. He suggested getting the therapist’s evaluation. He suggested stregthening my core muscles now would be a good thing before beginning to run on the treadmill. 😮 (We’ll see how that goes.)

      I hope you all have a blessed weekend and God grant’s you healing and relief.

      In Christ as always, Gary

    • March 3, 2009 at 10:17 pm

      I’ve missed you all. I haven’t had much spare time lately. I began a new Bible study (Community Bible Study) and my parents were just down for a visit.

      I had plasma exchanges the week before last. They did lab work and everything was normal except my hematocrit. I normally run border line anemic (years before CIDP onset), but this time it was lower than normal. They seemed concerned and said we’ll need to “watch it”. This might explain my light headedness. My feet were burning and numb and my fingers were tingly and numb on the ends before and after the PEs. So I new it was time and also I knew that extending my PEs out to four weeks is not wise at this time. (Come on Azathioprine)…

      I began the azathioprine Saturday. No ill effects so far 🙂 . I’m praying for no side effects, no ill effects and a faster than normal response.

      I have stopped physical therapy, but continue to do my foot and finger exercises at home. I’m also continuing my exercise routine (I’m not running again yet…). :rolleyes:

      May God richly bless you all,


    • March 11, 2009 at 12:07 pm

      Well so much for being busy. I was laid off from 28 years of employment last Friday. And CIDP played a big role in the loss of my job. 🙁 Enough said on that …

      I’m scheduled for PEs this coming Thursday and Friday. It will be interesting to see if my hematocrit level has changed. I’ve felt fairly good. The heat and numbness has just begun to return to my fingers this morning. My feet have not begun to burn again yet. The thing I notice most about my feet is that “sand” feeling on the pads of my feet and the (numbness) in my “ring toes”.

      I actually ran (well jogged) on the treadmill last Friday 😀 (before the lay off). I jogged for 5 minutes. I was not steady at first and it felt rather clunky, but I was able to let go of the hand hold and really jog for after the first minute. My leg muscles tired quickly, but this was after I had already been on the elliptical machine for 30 minutes. Of course my leg muscles were very sore Saturday morning. My wife and I went on a 3 mile walk Saturday morning and I was able to work out the soreness. I was again very tired after our walk. We haven’t been on our walk since I came down with CIDP over a year ago.

      So thanks be to God for the recovery I have made.

      I’ve been taking one 50mg Azathioprine tablet daily now for a 1 1/2 weeks. No ill effects. I will step it up to 3 tablets daily on Saturday.

      We’re praying for no ill effects and for faster than normal results.

      May God bless you all with healing from this terrible disease.


    • Anonymous
      March 11, 2009 at 11:08 pm

      Hi Gary,
      I’m glad the Azathioprine is going well so far. Just a caution based on my husband’s bad experience with it. When he upped his Azathioprine to 150 mg. he began getting chills, backache, and an afternoon fever. The symptoms started about 3 days after he upped the dose. Each afternoon, he would get the fever and chills and joint aches and I would give him a Tylenol to bring down his fever. On day four of the increased dose his fever went to 103. We tried calling the doctor with no luck, and decided to go to the hospital. By the time we got to the hospital his fever was over 104 and he was diagnosed with sepsis. It was pretty scary in that the emerg. doctors zeroed right in on what was going on and discontinued the Azathiprine, but he was transferred in the morning to a medical unit where they wanted him to start the Azathiprine again. He refused and was very ill and in hospital for about a week. Signs of sepsis are: * If a patient has sepsis, they often will have fever. Sometimes, though, the body temperature may be normal or even low.

      * The patient may also have chills and severe shaking.

      * The patient’s heart may be beating very fast and breathing rapidly.

      * Confusion, disorientation, and agitation may be seen as well as dizziness and decreased urination.

      * Some patients who have sepsis develop a rash on their skin. The rash may be a reddish discoloration or small dark red dots throughout the body.

      * You may also develop pain in the joints at your wrists, elbows, back, hips, knees, and ankles.
      I don’t want to scare you–just inform you. We didn’t have a clue about what was going on until after the fact. Good luck and my fingers are crossed that all goes well. Just wondering if you had the TMPT test prior to going on Azathioprine? This test detects patients who will likely develop sensitivity to Azathioprine. We asked for it but it wasn’t available in Canada–only in the States.

    • March 12, 2009 at 12:33 pm


      Thank you so much for sharing your experience reply and caution. My neurologist told me that if I experienced “flu like symptoms” to discontinue the Azathioprine immediately. He didn’t say why. He implied that it would be most likely to occur while I was on 50mg per day. Now I’ll watch for it particularly when I up the dosage.

      I will now search for sepsis and get some details on what it is. I haven’t heard of the TMPT test, my neurologist didn’t mention it. I will ask him when I go to my PE treatment this afternoon.

      May God richly bless you, your husband and family for sharing and caring. May he also heal your husband.


    • Anonymous
      March 12, 2009 at 1:22 pm

      Hi Gary,
      Sepsis is life threatening if it really starts affecting all of your organs. In their search for the source of infection at the hospital, they found hubby had elevated lipase levels indicating mild pancreatitis starting, atlectasis/consolidation(lung collapsing and pneumonia) of the right base of lung, and numerous blood values that were elevated. And all this within 13 days of starting the medication! The big thing that happens with sepsis is organ shut down so it is critical to stay on top of any flu like symptoms. Wish our neuro. had given us some guidelines.

      My husband remains a bit traumatized yet after his experience. i.e. the triage nurse was right on top of what was going on and he had a crash team of doctors and nurses surrounding him withing 5 minutes of arriving at the hospital. They started up IV’s, had xray machine right there, lab technicians etc. He was experiencing a little disorientation from the high fever, and he felt like he was being attacked. He began flailing and asking them to stop as he was scared. But they did it to save his life. Your guy sounds good. My husband thought it was smooth sailing too until he upped the dose.
      Thank you for your messages of God’s blessings. Hubby is in having his IVIG today and tomorrow. May God bless you and your family.

    • Anonymous
      March 14, 2009 at 9:26 pm

      Hello Gary,

      Bummer about the layoff. I hope you can find something soon and that you can use COBRA for insurance in the meantime.

      As for the azathioprine, my neurologist was pretty aggressive with blood tests at the beginning: once a week for a month; then once every two weeks for two months, then one a month for three months, then quarterly twice, then every six months. I ramped up to the full dose over five weeks (my dose was 250 mg), so I am confident we would have found a liver problem promptly. It appears that the typical dose for immunosuppression in CIDP is 2 mg/kg/day. However, I have had better success with reducing the prednisone dose by moving up to between 2.33 and 2.50 mg/kg/day of azathioprine.

      On the hematocrit, it is possible that your anemia is from the plasma exchange (it does mess things up some, and my dialysis nurses often see anemia with plasma exchange patients). Another explanation might be what is called the anemia of chronic disease. Apparently, many chronic diseases have the effect of producing anemia, by unknown mechanisms. I am anemic, and both my neurologist and primary care doctor believe that the CIDP is the main contributor. I have my doubts, but I am not so anemic that it has any significant effect.

      Not to disparage in any way Laurel and her husband’s experience with azathioprine, but sepsis is not common. Watch for it, but it is unlikely that you will have a problem with it. The likely cause of sepsis is thiopurine methyltransferase (TPMT) deficiency. A complete deficiency in this enzyme can result in sepsis, while a partial deficiency would lead prescribing a low dose of azathioprine. It is a relatively uncommon genetic mutation, so that is why it is not common.

      Godspeed in the job search and in the azathioprine treatment.

    • Anonymous
      March 15, 2009 at 12:38 pm

      Hi Mark,
      I have a question. If a person has TPMT deficiency which it seems my husband may have had, is it likely that they will have problems with other immunosuppressants such as Cellcept? My husband’s neuro. keeps pushing for him to go on Cellcept, but because of the azathioprine fiasco he has balked. Thanks.

    • Anonymous
      March 15, 2009 at 3:51 pm

      GaryO Get a second opinion. I had three before my cidp was confirmed.

    • Anonymous
      March 15, 2009 at 7:01 pm

      Hi Laurel,

      First, because I am not a medical professional, you should verify anything I say with your doctor.

      Immunosuppressants generally work by interrupting some metabolic pathway in the immune system. Both azathioprine and CellCept are purine synthesis inhibitors. Azathioprine is what is called a pro-drug. It is first converted by the body into two active metabolites. These are deactivated by TMPT. If the deactivation does not occur, then the toxic effects happen. Here is a link on azathioprine ([URL/]http://www.salix.com/assets/pdf/prescribe_info/azasanpi.pdf[/URL]), CellCept works by interfering in a different way, without producing the same toxic effects. Here is a link on CellCept ([URL/]http://www.rocheusa.com/products/cellcept/pi.pdf[/URL]).

      Because they work in different ways, I can understand why your husband’s doctor wants to try CellCept. It is certainly worth a try, although the medical community is less enthusiastic about it in CIDP than it was a few years ago. If it is going to work, it should start to show some effectiveness in about 3 months, although you should be prepared to give it longer.

      If you have good insurance, it should not be a problem to afford. Otherwise, it is quite expensive. It is a bit of a pain to administer, because it needs to be taken on an empty stomach, which means ingesting only water for the previous 2 to 3 hours and the following 1 hour.

      Godspeed in finding a good treatment,

    • Anonymous
      March 16, 2009 at 2:12 am

      Hi Mark,
      Thanks so much for all the good information. I have read as much as I can find on Cellcept and CIDP. Just about everything I read says the efficacy is only about 20% which seems low to take a risky drug. I am trying to research Interferon and CIDP and so far haven’t found very much. I have MS and took Interferon–Ribif for 6 years and then Betaseron for another 5 yrs. It worked a miracle for me. Then I developed neurtralizing antibodies and had to go off. I am very interested in Interferon as a possibility for my husband. You seem to know your stuff. Do you have any thoughts on Interferon?

      We have good insurance in Canada. The government pays for all IVIG and Cellcept will be covered by our extended medical plan. So cost per se isn’t a huge issue. But the government pushes hard for doctors to prescribe the least amount of IVIG as required due to its high cost.

      Thanks for your help Mark. And absolutely we will run everything by our doctor so never fear that we will run amok with internet advice.

    • April 6, 2009 at 3:42 pm

      Hi all.

      I’ve been out for awhile. Here’s the latest.

      I had PE treatments last Thursday and Friday. They went well. Saturday I had a stomach bug of some kind. I still am not 100% back from that. The Azathioprine hasn’t seemed to help much yet.

      My CIDP flared up late last week. I had been feeling crummy for a few days. Lots of gas bubbles being generated in me.

      I need to do my 1st month labs after beginning the Azathioprine (I will try again to get the blood drawn this Wednesday. The Baylor College of Medicine Lab couldn’t seem to get it together last week while I was in the neighborhood). But I’m wondering if the gas bubbles are an indication of my digestive system reacting to the Azathioprine? We’ll see what the labs turn up.

      I learned recently that another long time friend was diagnosed with CIDP last year. She is the same age as me. Really bizarre. I lead her to this discussion forum and she really learned a lot from the threads. I hope she joins the family here. She’s really a sweet person and you’ll enjoy her.

      In Christ, Gary

    • October 26, 2009 at 9:57 pm

      Hullo Everyone, I’ve missed you.

      I had a bad reaction to Azathioprine and had to stop taking it. Fatigue and sour stomach set in (flu like symptoms) and I took my self off. The neurologist suggested starting again slowly at my next visit. I took one tablet and was violently ill within two hours and it lasted for 12 hours.

      I start cellcept as soon as the meds arrive.

      I am now up to 5 weeks between plasma exchange treatments. I have regained most of my muscle control and feeling. My toes still have numbness and the bottoms of my feet still have the “bunched up socks” feeling. I’ve regained a lot of reflex response in my arms, legs and feet.

      My neurologist said he was amazed at the strength I’ve regained and my neural repair. He said he can’t explain it and said based on my initial electrical nerve conduction tests my prognosis was not good. He is very pleased and said I was his “poster child” for “hard work” results. (I credit God!)

      Praise God too, I have a job. It really was a God send. I’ll have to share it with you sometime.

      I have a friend who’s granddaughter was diagnosed with GBS recently. Her docs said they couldn’t find anything wrong with her and attributed it to being “all in her head”. 😡 He knew my condition and knew that her symptoms were similar and asked me to speak with her mother.

      To make a long story short, I urged her to talk with her docs about GBS and insist on starting IVIG. They did and she responded quickly and was diagnosed with GBS. She’s now recovering. I urged her mom to vist my friends at the forum.

      God bless you all. Here’s hoping Cellcept is tolerated by my body and the Plasma Exchanges are stretched out further.

      In Christ,


    • Anonymous
      October 27, 2009 at 1:43 am

      It’s good to hear from you Gary. Good luck with the Cellcept. From what I have read, it seems to be better tolerated by most than the Azathioprine. And it is wonderful that you have a job. I’d love to hear the story about it being God sent. Sounds like you were a blessing to the young girl with GBS. Keep us posted on the Cellcept and how you are doing, and write more details when you have time i.e. about the job and how you are feeling.

    • Anonymous
      October 27, 2009 at 9:24 am

      Welcome back Gary,
      Great to hear of your improvement.
      Congratulations on your job.
      You were God sent to be able to talk to your friend and the young girls’ mother.
      Will pray that she makes continued recovery and you get continued improvement.

    • November 3, 2009 at 10:14 pm

      Thanks Laurel and Shirley.

      I started Cellcept last Wednesday 250mg once/day for the 1st week. So far so good. I’m supposed to go up to 500mg twice/day (1000mg total) starting tomorrow. Azathioprine was such a horrible experience Dr. Osborne (sic) is thinking of going to 500mg/day for a week before going to the full 1000mg.

      I felt a little nausea and bloating the first day and a little “off”, but it doesn’t seem to be intolerable.

      My body is telling me it’s time for another PE (numbness, burning, fatigue, smeller screwed up). I’ve had 1 PE in the last 6 weeks. My next PE is this Friday and I have another scheduled for the following Friday. So I’m averaging 2 PEs every 5 weeks now. That in itself is amazing to think I can go so long between treatments with relatively little impact.

      Here’s the most amazing thing … I can run and I mean really full out sprint. I have also been doing some jogging. My goal is to get back up to running in a 10K.

      Who’d a thought such a thing when I was in a wheel chair in August of ’08 … I just have to praise God for what He’s done for me. And thank my wife, family, Church and all of my Forum family for their support, encouragement, wisdom, direction, and love.

      I am so blessed.


    • November 11, 2009 at 8:22 pm

      I’m on full dosage (2000mg/day not 1000 as I 1st reported) of Cellcept as of today. My immune system seems to be really active, I wonder if it’s responding to the Cellcept??? The sensory numbness in my fingers through my fore arms up to my shoulders is very noticeable today. I had two PE’s last week (one on Wednesday and one on Friday). It is the first time I went 6 weeks with only on PE for the 1st time since my initial 5 PEs. (It was a little too long though as my right leg was giving me a lot of trouble.

      I’m leaving to go to the gym now to do my weight training and 30 minutes of aerobics on the elliptical machine. Exercise seems to be very helpful to my neural network as I usually always feel better neurologically after wards.


    • November 11, 2009 at 11:57 pm

      Please don’t be mad at me for mentioning this, I just want you to be aware of it. At the symposium one year ago in Chicago, it was mentioned that Cell Cept CAN cause CNS issues for people with cidp. Just a question, if someone were to get PE more often, wouldn’t the cell cept be washed out too? Does your getting it 6 weeks apart allow for the cell cept to work by the time it is time for PE again? YOu mentioned the numbness in your forearms is very noticeable, could this be a cns issue as a result of the cell cept. Try refering to With Hopes notes from the symposium last year. The notes were very informative and I am almost positive I remember seeing the cell cept info in her notes. It may have been Dr. Lewis that mentioned the Cell cept comment, don’t quote me on that though. It was a year ago. good luck!! Glad things are looking up for you.
      Dawn Kevies mom

    • Anonymous
      November 12, 2009 at 5:10 pm

      When I went to see Dr. Engel at USC, he prescribed 1 shot of B12 per day subcutaneously (sp?) and folic acid by mouth once a day which is supposed to help regenerate damaged nerves due to the CIDP. My legs were black and blue from the shots. After awhile my local doctor talked to him again and we got it lowered to 1 shot per week intramuscular.

      So even if the B-12 deficiency is a symptom of CIDP…the injections should be helpful just not noticeable. Good luck getting some resolution…it seems like we are all always pulled back and forth trying to get a handle on all of this.

    • November 12, 2009 at 9:13 pm

      Dawn, I would N E V E R “get mad”. Thank you so much for sharing and caring.

      I am going to call my neurologist tomorrow and tell him about my symptoms. Something is definitely not right. 🙁

      MPHILLIPS33, thanks for your post too. I still take B-12 injections at least once per month. Although my B-12 levels have been normal in recent blood tests, my neuro continues to prescribe it and I’ll keep taking it. I want to ensure my nerves have everything I can give them to restore their health/function.


    • Anonymous
      November 14, 2009 at 12:41 am

      [COLOR=black]Hello Gary,[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]I am sorry things are not going quite so well. Were you ever checked for serum TPMT? That might explain the symptoms and will show that you should not use it again, not that you are likely to. [/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Unless Dawn corrects me, I believe the CNS involvement she refers to is an increase in the risk for progressive multifocal leukoencephalopathy. This disease, which is more often than not fatal, is caused by the JC virus. Something like 70 to 90% of people are infected with it, but immunosuppression makes it more likely to become active. I think the number of cases involving CellCept and PML is about 15, out of about a hundred thousand people taking the drug. Note that most of these people were transplant patients who take other immunosuppressants as well and therefore would have been more susceptible than someone taking only CellCept.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]This is not to say that you should not take Dawn’s concern seriously; you should. I would talk with your doctor soon. Your tingling could be from CellCept. It might be a sign of improvement. [I often get tingling as symptoms worse, only to have it then stop. After treatment, the tingling returns, and then goes away.] Or it might just be a local exacerbation. Your doctor and you can work to figure out which it is.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]I suppose plasmapheresis washes most everything out that is currently in the blood. CellCept is absorbed into the tissues, though, so I don’t think plasmapheresis will blunt its effect too much. [/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Godspeed in finding improved treatment.[/COLOR]

    • November 16, 2009 at 8:09 am

      Thank you Mark. I was never checked (to my knowledge) for serum TPMT and yes, I’m not apt to use Cellcept again. This is really a bummer, 🙁 as I was hopeful my body would tolerate it and extend the time between PEs, but no such luck. I too get tingling as symptoms worsen. And frequently the tingling returns a couple of day after a treatment and then goes away.

      I felt horrible Thursday: tingling, numbness, burning, a tic in my cheek, eyes burning, itching on my neck, back, arms and legs, lips burning and flushed, that “flint and steel” smell was very prominent, ringing in my ears and my vision had a bright seashell looking spot in the upper left of both eyes. I had a low grade headache and slight joint pain in my right hip, fingers and right knee. I did feel better though Friday morning which helped confirm that it was a reaction to Cellcept.

      I tried an experiment Friday. I took 500mg cellcept in the mid morning and within 30 minutes the my lips started burning and feeling flushed, the tingling returned to my fingers, toes, arms, legs, and the tic returned to my cheek.

      I took another 500mg in the afternoon and within an hour started feeling quite lousy again.

      I didn’t take any more Cellcept Friday, Saturday or Sunday. Saturday afternoon I started feeling better again. I still have some itching on the arms legs and back, the numbness has diminished except for my toes. My lips are slightly burning, but feel almost normal again. Sunday I was fatigues so I went to the gym and went through a full workout.

      So I’m starting to get back to “normal”. I am going to relay all of this to my neuro.


    • December 4, 2009 at 10:48 am

      I’m still battling back from the Cellcept set back, but things continue getting better.

      I took the H1N1 swine flu vaccine yesterday. I had a slight headache and felt warm yesterday, but that’s all except a sore shoulder.

      I had another PE last week. I’m scheduled for another on 12/11/09. Plasma Exchanges (Pheresis) are doing wonders for me. The longest I’ve been able to go between PEs are 5 weeks so far. It’s too bad I haven’t tolerated the immunosuppresants so far, because I would like to extend out that time dramatically, but initially I was getting PE’s ever two weeks so I feel blessed that I’ve made it to 5. My goal is to get back to 5 and try for 6 weeks as soon as I’m completely over the cellcept.

      I pray a wonderful Christmas for you all and a CIDP/GBS free 2010.


    • Anonymous
      December 4, 2009 at 12:33 pm

      Hi Gary,
      Does that mean you are right off the Cellcept? Merry Christmas to you and your family.

    • December 4, 2009 at 6:38 pm

      Laurel, Yes, I’m off Cellcept. My neurologist suggested waiting until things calm down and maybe trying it again. I’m skeptical.

      Thank you for the Christmas wishes.

      And very blessed and Merry Christmas to you and your family too.


    • December 16, 2009 at 8:53 am

      I’m still not quite back to where I was before trying Cellcept, but very close.

      I had no issues from taking the H1N1 swine flu vaccine. The headache, and feverish feeling went away the next day.

      I had another PE last week on 12/11/09. I was kind of wiped out that evening, but bounced back quickly. I scheduled my next one for 1/15/10 (4 weeks) and intend to have one the following Friday too. (back to a 5 week schedule). Hope the effects of this last PE last that long.

      I am working out regularly at the gym still. On alternating days I do “aerobic heavy” (for me) alternating with “aerobic light plus weight training”. My aerobic heavy is going 30 minutes on the ellyptical machine (400 calories) and 30 minutes on the treadmill (200 calories). My aerobic light is 30 minutes on the treadmill [B][U]or [/U][/B]ellyptical machine. My weight training consists of 2 sets of 10-15 reps: dumbells 35#, lat pulldown 70#, butterfly 125#, and bench press 160# (arms upper body); 2 sets of 15 reps each leg press 208#, calf extensions 208#, leg curl 100#. I am doing set ups as well, but I’m only back up to 35 (I was doing 70). I tried jogging on the treadmill Monday evening, but my feet are still too unsteady (numb post Cellcept) to let go of the bar. My ultimate goal is to get back to running in a 5-10K.

      I still do my physical therapy band exercises for my feet, ankles, and lower legs and my finger/grip exercises regularly.

      I realize I am SO blessed to have recovered so much. But it is so fleeting; the deterioration is very quick and I have to stay after it constantly.

      My prayer for all of you still is for a wonderful Christmas and a CIDP/GBS free 2010.


    • January 4, 2010 at 8:54 am

      HAPPY NEW YEAR! Twenty 10, wow!

      I think the cellcept is completely out of my system finally.

      CIDP flared up a few days ago with the burning, tingling, numbness in my hands and feet and skin crawling and muscle twitching in my arms and legs. It lasted just over 2 days. This happens every couple of weeks.

      My next scheduled PE is January 15th, but that will be 5 weeks since my last PE, not 4 weeks as I tried to schedule. I feel like I need to get one this week so I’ll try to get it scheduled.

      I started a “cleanse” Saturday 1/2/10. I have gained about 20 pounds in the last few months and need to get my diet back in order. Some of the weight gain is muscle mass, but too much of it is just fat. I am hoping the cleanse will get my metabolism reset and let me drop a few pounds.

      The cleanse so far has made me feel very fatigued during exercising especially in my legs. My arms and shoulders are feeling fatigued as well. It’s interesting that my shoulders feel fatigued when I’m sleeping.

      I’ll need to watch this closely as I don’t want to lose any muscle mass. My body is still trying to rebuild muscle from my CIDP losses and I don’t want to compromise that in any way. The cleanse calls for a strictly vegan diet for 11 days with protein shakes. I plan to alter my protein intake to ensure my system has what it needs.

      May God bless you all in 2010 with health, prosperity and much love,


    • January 19, 2010 at 12:52 pm

      I had PEs on the 8th and the 15th. I was on the one of the old machines on the 8th and a new machine on the 15th. I mention this because I’ve noticed that frequently with the old machines I get a “strange taste” in my mouth and a “flushed” feeling during the procedure; sometimes at the beginning of the PE, most times towards the end of the PE. However, I have never had this happen on the new machines. I’m guessing the new machines have a better control system that regulates something better than the old machines. I scheduled my next PE for 5 weeks from the 15th … here’s hoping I can make it that long and that I get on one of the new machines. 😉

      I have been feeling very well the last 3 days. Last night I felt a little inflammation or burning in my fingers and a little fatigue, but it’s not evident today.

      I have lost 12 lbs. on the cleanse diet and dropped two notches on my belt. And my blood pressure dropped 10 points (my blood pressure increases linerally with my weight).

      Our Church’s praise and worship team played for the pre-race Protestant Service at the Houston Marathon Sunday. Being around all those runners increased my desire to run in a 10K event again. 😮

      May God richly bless you all my friends,


    • February 1, 2010 at 12:20 pm

      I ran/jogged for 10 minutes on the treadmill Saturday. I was grinning from “ear-to-ear” although breathing hard and sweating profusely (I know, TMI). Actually running again on the treadmill (and not feeling like a face plant was imminent) was thrilling. I noticed my lower back was a little tight towards the end (my neurologist warned me that my core muscles still need strengthening). My legs are a little tight today, but I feel well enough to try it again tonight 😮 . I have a long way to go to make it to a 10K, but the journey has begun.


    • February 19, 2010 at 9:29 am

      I have a PE scheduled for this afternoon. It has been 5 weeks since my last PE. 😀 I will schedule another for next Friday. 2 treatments in 6 weeks is the longest I’ve gone since beginning on this journey. I hope to stretch it further.

      But it’s definitely time for a treatment, my feet and fingers are burning. Muscles are twitching/crawling. My right leg is again the most affected as it doesn’t quite work correctly. The backs of my thighs always seem to ache and burn especially if I’ve been sitting for awhile. It sort of feels like a sunburn or rope burn, very tender.

      I’ve noticed we seem to have difficulty putting what we feel into words. The sensations are not normal and it’s not easy explaining the feelings. Basically I feel pretty crummy.

      I had an ocular migraine a few days ago. 😮 I felt nausea and a little disoriented and had a headache and tinnitus. The vision in the lower left corner of my left eye was missing, sort of jumbled or like looking through a Fresnel lens. It cleared within the hour, but my headache remained throughout the day.

      I have been exercising regularly and it helps. I haven’t lost any muscle tone. My hair is growing back from the cellcept losses. My eyebrows are almost completely back, but the back of my head is still sparse.

      Praying for you all and for a cure for this disease,


    • February 19, 2010 at 1:29 pm

      Hi Gary,
      Wow! Great news on the spacing of the pp. Glad your hair is growing back! Is it coming in darker or curly? A relative of ours had hers come back reddish and curly :D. Well take it easy this weekend!

    • February 19, 2010 at 9:38 pm

      Thanks Dawn. LOL! My hair is coming back quite the same (salt and pepper … more salt than pepper, heh heh heh).

      The PP went well. I [B][U]am [/U][/B]going to take it easy and head to bed.

      Good night my friends …


    • February 20, 2010 at 2:04 pm

      Hi Gary!
      Hoping that you are going to continue to feel better and I do hope you get enough rest with your ambitious program. I am sending prayer energy your way.

    • March 15, 2010 at 3:36 pm

      Katy, thanks for the prayers. Sorry it took me so long to respond.

      I had Plasma Pheresis procedures on back to back Fridays 2/19 & 2/26. That made 2 PEs in 6 weeks (tied a record for me). They both went well.

      I saw my neurologist on Friday 3/5/2010. The appointment went very well. The neurologist was very pleased with my reflex responses, strength, motor function and sensory responses. The tops of my feet by my big toes and the bottoms of my feet still have areas of numbness where the feeling has yet to return. He said that based on my prognosis when he first saw me, he would never have expected such a drastic recovery and even talked about remission. He wants me to work towards 2 PEs in 7 weeks and to continue to try and stretch them out.

      I told him I was training to run/walk in the 5K Miracle Mile. He was very encouraging and suggested contacting my local newspaper to publicize it. He offered to talk with the newspaper as well. He asked me to be a “guinea pig” for his clinic at the Baylor College of Medicine to see if they could diagnose CIDP with me telling them that I may have CMT. I agreed. Anything I can do to help educate aspiring neurologists is well worth my time.

      We discussed my adverse reaction to cellcept. He suggested trying to see how far I can get extending PEs without immunosuppresants for the time being. I DEFINITELY AGREED!

      Last week was not a good week. I had low grade headache, burning, tingling in my extremities (especially my fingers), and my right leg was acting up again. I restricted my workout routine to weights and the ellyptical machine and walking on the treadmill.

      This week is starting out much better. No headache, no burning, no tingling and my leg is working well. I’m going to try and run on the treadmill tonight (preparing for the Miracle Mile 5K).

      Yesterday some dear friends in my Sunday School class whose young grandaughter in nursing school just went through a battle with GBS told me that their grandaughter is running 3 miles daily preparing for a marathon. The last I had heard she had terrible headaches and was struggling with her studies and physical recover. I guess she has recovered quite a bit recently to be preping for a marathon! I was elated and encouraged them to have her write down her story so she can share it with others.

      I wish you all well. If you need the name of a fantastic neuro in the Houston area let me know …


    • Anonymous
      March 15, 2010 at 3:54 pm

      [QUOTE=GaryO Houston]
      I wish you all well. If you need the name of a fantastic neuro in the Houston area let me know …

      [I]Gary, I think we covered this previously, but I don’t remember … my neuro in Houston works with Baylor but I was seen at the Methodist Hospital neuro institute. Could we both be seeing a short little guy who always wears a bow tie and has a ridiculously superior sense of humour and rapport with his med students … and patients?

      My guy has as his primary subject of interest ALS.[/I]

    • March 15, 2010 at 5:01 pm

      Rocky, my neuro is Dr. Mosier. Gary

    • April 12, 2010 at 7:16 am

      I’m doing well. I had a PE Friday (2 PEs in 6 weeks is now my average). I asked the Blood Center physician Friday about my treatment schedule and the Miracle Mile as my neurologist requested. The Blood Center physician told me that I should not have strenuous exercise immediately after a PE or exercise strenuously at the end of my PE cycle (because I probably will be at my worst physically). Since the Miracle Mile is two weeks after this last PE my current schedule should work out perfectly. He recommended “blood doping” 😮 and said he could fix me up … just kidding!

      My Chiropractor son was down to visit this weekend so I had 4 adjustments, one was Friday morning before I had my PE, I had another Friday evening just after my PE, then one on Saturday and one on Sunday before he left to go back home. Wow! I think “Obama Care” should provide us all with our own private Chiropractors! 😉

      I was interviewed by our local news paper last Thursday evening, which was a new experience for me. I actually enjoyed it. My objectives were to publicize the Miracle Mile, educate people about CIDP & neurological autoimmune disorders, the importance of early diagnosis and treatments, to give people hope that recovery is possible, and to give God honor and glory for my recovery. It will be interesting to see how the article turns out.

      Did you realize that CIDP is mentioned in the Bible?

      [COLOR=”Blue”][B][I]Psalm 145: [U]14 The LORD upholds all those who fall[/U] and lifts up all who are bowed down. 15 The eyes of all look to you, and you give them their food at the proper time. 16 You open your hand and satisfy the desires of every living thing. 17 The LORD is righteous in all his ways and loving toward all he has made. 18 The LORD is near to all who call on him, to all who call on him in truth. 19 He fulfills the desires of those who fear him; he hears their cry and saves them. 20 The LORD watches over all who love him, but all the wicked he will destroy. 21 My mouth will speak in praise of the LORD. Let every creature praise his holy name for ever and ever.[/I][/B][/COLOR]

      All Praise and Glory and Honor to the Living God,


    • Anonymous
      April 12, 2010 at 4:12 pm

      LOVE your scripture about falling in the bible. I would never get through this disease without the Lord. It is great that you were interviewed and was able to talk about CIDP and autoimmune issues. Every time we can get info out about this disease, the better it is for people to understand what we deal with. Good luck to you and God Bless:) .

      Clare in Michigan

    • Anonymous
      April 12, 2010 at 10:19 pm

      Wonderful scripture! The Lord holds me in the palm of his hand, protects and heals me. Thank you for reminding us, Gary.

    • Anonymous
      April 13, 2010 at 7:47 pm

      I also was diagnosed with a B12 deficiency about 1 year after a gastric bypass surgery….BUT….that was also about 1 year after my symptoms began. The question seems to be, is the deficiency a product of the CIDP??? My sister who was diagnosed about 4 years ago does not have the b12 problems.

    • April 14, 2010 at 6:51 am


      Wow! You and your sister? The odds must be astronomical! 😮 My B-12 levels are in the normal range now and were just below normal when the 1st neurologist misdiagnosed me as being B-12 deficient.

      The 1st neurologist said that my stomach wasn’t producing intrinsic factor that is used by the body to utilize B-12. Gastric surgery sometimes causes B-12 deficiency for that reason.

      I think my borderline B-12 deficiency was actually a result of my body trying to repair the extensive damage to the myelin. B-12 was being depleted more quickly than I was taking it in.

      So at least for me CIDP caused my B-12 deficiency.

      I still take monthly B-12 injections to ensure I have enough B-12 for the re-myelinating process and don’t plan to stop.

      I hope you and your sister get better.


    • Anonymous
      April 14, 2010 at 8:13 pm

      Gary, If you want the entire story read the “help getting a diagnosis” thread…I posted that a few days ago….You want some crazy odds….5 girls,my mother, and female cousin on my mothers side…of all of those girls only 1 is free of autoimmune issues! Melissa

    • May 18, 2010 at 5:10 pm

      I had a PE last Friday 5/14 (5 weeks since the last one). I scheduled the next one for Friday 5/28 (that’ll make two PEs in 7 weeks … a new record for me). I hope I don’t experience any significant regression. I’ll just see how it goes.

      The Miracle Mile made quite an impact on me as I’ve written in a few other posts. I’ll put the link here in case you haven’t seen the news paper article about my participation. [HTML]http://thefacts.com/your_town/brazosport/article_0387fd66-5ca6-11df-8b72-001cc4c03286.html[/HTML]

      I’m feeling pretty good (hence spreading my PEs out further). I am playing golf regularly again (shooting in the 90’s … my handicap used to be 7) and getting serious about starting training for a 10K run. 😮 I’m just blessed to be able to even think about it.

      We’ll I’m off to Bible Study … Community Bible Study (Revelation). Tonight’s the last night of the study, it’s been awesome. If you ever wanted to study Revelation (and believe me it’s timely), I recommend looking for a local CBS study.

      May God grant us a cure for these neurological auto-immune diseases and heal us all.


    • May 24, 2010 at 7:35 am

      My feet and lower legs are really burning and numb this morning. I have a slight low grade headache and my fingers are burning and the tips are numb in places. My right leg is not working quite right either. My legs were rather fatigued yesterday as well. Usually exercise helps. We went for a walk last night at the jetties (high tide, strong wind, BIG waves, sea weed on the beaches, but no oil). When we got back home I also did my finger exercises, grip exercises, and the physical therapy rubber band exercises they taught me to do for strengthening my ankles, feet and lower leg. I mowed the lawn and fertilized yesterday afternoon. I did feel slightly better after the activities, but this morning is rough.

      This is week 7 of my plasma exchange cycle. (2 PE’s on back to back Fridays).

      I am trying to extend the frequency from 6 weeks to 7 weeks, but this morning I’m thinking 7 weeks is just too long. My next PE is scheduled for Thursday afternoon, but if I still feel this way tomorrow I am going to try and get in Tuesday.

      Maybe this latest attack will abate by then???

      Hope y’all have a blessed day …


    • May 28, 2010 at 9:59 am

      Had my PE yesterday (yipee and whew). I had a B-12 injection Wednesday evening and had begun to feel a little better, but the surface numbness on my arms and legs had moved up to my elbows and the tops of my calves (I told my wife it felt like something had been wrapped on my arms and legs … like plastic wrap). And I felt the surface numbness on my face too. The tips of my fingers, my toes and the bottoms of my feet were the worst and the numbness was very pronounced and deep.

      The PE was pretty rough on me for some reason, my chest felt tight and I felt congested. I perked up quickly though after it was over (a couple of hours later).

      I set up my next PE for 5 weeks and probably will have the second one on the 6th week. I don’t feel much like experimenting again for awhile unless I recover quickly … we will see.

      I’m just thankful that I’ve been able to push it out to a 6 week cycle. PE is not very intrusive or traumatic and does great things for me in allowing me to recover. But it also does kinda suck being tied to the hospital and getting stuck with needles. And the thought of having to do this the rest of my life is not a happy thought. (Sorry for whining).

      Here’s to recovery and Hoping for a cure …


    • June 24, 2010 at 7:09 am

      I’ve been battling a cold since last Thursday 6/17. It’s really pulled me down. Coughing, congestion, flu like symptoms, … you’ve got the picture. And (of course) my immune system kicked into high gear and thus CIDP went nuts.

      I was invited to a membership drive dinner for an organization that distributes Bibles Monday 6/21. I could hear coughing and sneezing from 2-3 folks as I entered the conference room. I was shown to my seat and (wouldn’t you know it) I was sat down right next to a fellow who was literally dripping (and spraying as he sneezed and coughed) with infection. Not wanting to be rude, I accepted the seat and the evening wore on …

      I think I’m finally on the mends, but the fatigue, numbness and prune fingers are very pronounced and my right leg’s motor function doesn’t quite feel “right” again. I lifted weights yesterday (upper body only), but haven’t done any cardio vascular in over a week. I hope I can get back to the gym soon, but my parents are coming down for a visit and entertaining may exclude the work out routine.

      We went to see our youngest son and daughter-in-law last Friday. We ate lunch Friday at an outdoor open air restaurant at a nearby lake. It was 95 degrees F and with my cold, the heat and CIDP, I thought a couple of times that I was going to pass out. I drank a lot of iced tea and stayed in the shade and recovered enough for me to get back to the car and air conditioning. We went to a wedding for my pastor’s daughter Sunday evening. It was a location wedding on a lake in the piney woods of Texas. 95 degrees F again and it was an outdoors wedding in the full sun. I wore slacks, a long sleeve shirt and took my sport coat (but it never touched my body!). All in all the heat combined with my cold seemed to really drag me down all weekend.

      I’m due for another PE Friday July 2nd, which will be 5 weeks since my last PE. I’m hopeful I can hold out until then.

      Well, here’s to hope that a cure for CIDP/GBS can be found … cheers!


    • July 6, 2010 at 6:53 am

      I had a PE on Friday 7/2; 5 weeks, woo hoo! The congestion is almost completely gone now too. That cold really impacted me. My next PE is scheduled for this coming Friday 7/9.

      A curious thing happened during my PE last Friday. The “access” needle had been removed and I was in the “rinse back” phase which usually goes without issue, but the PE machine kept going into alarm. The nurse tried to adjust my wrist (the return was immediately above my right wrist) thinking the bend in my wrist was blocking the flow. But it didn’t help. The nurse looked at the return line and looking at what I guess is a filter of some sort said “that looks like a little clot, so I think we’ll just stop it there”.

      I thought nothing of it, but I was much more fatigued in general this last weekend, but especially in the shoulders. Mowing the lawn exhausted me to the point I didn’t think I would be able to finish.

      Yesterday, after working out at the gym, I remembered something someone told me about the “rinse back” phase of a PE; that during the “rinse back” red cells are returned. I wonder if stopping the PE during the “rinse back” didn’t replenish the red cells completely and that’s what exasterbated the fatigue?

      I’m going to ask the hospital staff and my neurologist this coming Friday.

      I do have an appointment with my neurologist this coming Friday. I’m looking forward to the appointment (except for that test where the bottom of my foot is raked with the sharp pointy thing … I hate that one).

      Well, hope you all have a blessed week,


    • Anonymous
      July 7, 2010 at 10:40 pm

      Hello Gary,

      Depending on the machine, the extra-corporeal volume is between 100 ml and 200 ml. I think this loss would be like what you might have if you had a bad cut to a middle-sized artery or vein, but the blood is staunched in a minute or so. If that sort of cut would leave you tired, then perhaps the lack of rinse back caused your fatigue. Otherwise, it might be related to residual effects from your cold and the typical heat in Texas.

      I hope you are feeling better now.

    • July 16, 2010 at 10:17 am

      Thank you Mark. You are an amazing source of information and encouragement. I felt better rather quickly after my last post. I did talk to the folks at the blood center about the rinse back during my last PE last Friday. They guessed between 200 and 400 ml which they said could be significant since I’m borderline anemic normally.

      I went to see a young lady with GBS in the hospital yesterday (even though my neuro says I shouldn’t frequent hospitals because of the diseases people have in hospitals are the ones CIDPers don’t want to catch). My heart is to encourage and enlighten people who are suffering from GBS/CIDP. She ended up encouraging me perhaps more than I encouraged her.

      The CIDP is flaring up again this morning (prune fingers, tingling, numbness, … you know the drill). I have been exercising regularly, but haven’t been keeping up with the physical therapy exercises that helped so much in my recovery. So I did my PT exercises last night and discovered how amazingly quickly we lose muscle tone if we don’t continually exercise. I need to remember to keep up my PT exercises regularly.

      I’m thinking of trying to extend my PE’s out to 7 weeks again. I really think I could have this last round without major consequences. So I would covet you prayers for wisdom/discernment as I consider this.


    • July 24, 2010 at 12:54 pm

      Just returned from a 2 hour 25 mile bicycle ride. Whew, I’m pooped! Last night I did 40 minutes on the elliptical machine, upper body and lower body weights. I’ve gained quite a bit of weight (some more muscle mass … yipee and some 100% USDA grade A lard 😮 ). I think the latter comes from sitting so much at work and eating powder sugar donuts. I’m giving up the donuts. I don’t take steroids so I can’t blame the weight on steroids. I turned 54 this last week. Thankful to be 54 and have treatments that work for CIDP.

      My neuro during the last visit said PE’s are like “keeping a finger in the dike”. My wife didn’t like hearing that. He said that indicating PE’s may not be the answer for me long term and that anything (injury, infection, illness, … ) could burst the dike. So I’ve been really interested in the Stem Cell discussions. So I’m going to talk with my neuro and the blood center folks about SCT and start the ball rolling so, if the dike bursts, I’m ready.

      I’m feeling fairly OK. The burning, tingling and headaches have abated down to a normal level. The fatigue for the most part is under control. I usually have to fight through the fatigue during the first 10-12 minutes of exercise, but then I “get into the zone” and it goes well. My former “lung capacity” has not returned yet though.

      I’m planning on skipping a week between PE’s again this cycle (what that means is I’ll have PE’s on the 5th and 7th weeks). Hope it works this time.

      God’s richest blessing for you all,


    • July 27, 2010 at 9:32 pm

      CIDP has really been flaring up the last two days. My feet feel like they’re on fire and a lot of numbness, my fingers have been burning and the tips look like a prune and are numb, my skin on my lower legs and lower arms is crawling, and my right arm and right leg aren’t working 100% correctly. This occurs on a 2 week interval, but this is the worst it’s been in awhile. 😡

      I had a B-12 injection this evening and hope that will keep it at bay until my next PE, but if not I will go in this coming Friday for a PE. I just got back from the gym. Worked on upper body, 30 sit ups, 40 minutes on the elliptical machine and 10 on the treadmill. I’m pooped again. My burning feets wanted to stop after 4 minutes … one must press on.

      This “syndrom” sucks!

      As Monty Python says … “And now for something really different” … I think I’m going to visit “The Lighter Side” and get some laughs … here’s hoping Jim’s posted some amusing photos … Then it’s off to the Tavern. I sure hope some of my old buddies are there.


    • Anonymous
      July 28, 2010 at 10:24 am

      Gary, Here’s my question.

      Isn’t it too big a coincidence for your flareup(s) to sound so much worse after your recent episodes of pushing on? Two questions. Do you keep a written log of “pushing on exercise” compared to symptom severity in the following 1-3 days?

    • July 28, 2010 at 10:54 pm

      Yuehan, thanks for the observation. I don’t keep a log, but should start. I always feel better after I exercise. I actually feel better tonight that the last two days. But if I kept a log I could get a better correlation and see what it might tell me.

      I mowed the lawn tonight. It was not quite so warm and humid as late July days can be here on the Gulf Coast. So I’m not quite as worn out as usual.

      My leg is better and I only feel a little numbness on the tips of my fingers. But my feet are still quite numb and achy. I think I’m coming out of this one. The B-12 injection last night probably has a lot to do with how I feel as well.

      Well, it’s off to bed for me.

      Good night my friends.


    • Anonymous
      August 3, 2010 at 7:23 pm

      I think everyone with CIDP has low vitamin B-12.


    • November 16, 2010 at 5:57 pm

      It’s been awhile since I’ve been on. I visited my neurologist last Friday and had a Plasma Exchange as well (with an oil change in between … no seriously I had the oil changed on my Outback in between the neuro visit and my PE).

      The neurologist visit went very well. My balancing on one foot test (whatever that one is called) was not as good as it has been, but I haven’t been practicing that for quite some time. My neurologist told be to keep practicing standing on one foot for 1 minute to keep exercising the muscles and pushing the nerve connections.

      I suggested trying to extend the PE treatments again, but he urged caution due to the set back I suffered last time. His concern was towards recovery if I let things go too far.

      I’ve reflected quite a bit lately on the extent of my decline and subsequent recovery. I am so blessed. I continue working out at the gym. I’ve injured some tiny muscle in my shoulder and I’m dropping down on weights and taking it easy until it recovers. I’m up to 45 minutes on the elliptical machine 3-4 times a week. My weight is coming down and I’m feeling better in most regards.

      PE twice on consecutive Fridays every 6 weeks is still my only treatment and it continues to keep the antibodies in check.

      I wish you all a happy Thanksgiving and Christmas. Hmmm, I think I’ll go have a round at the Tavern. Meet me there???


    • Anonymous
      November 16, 2010 at 8:31 pm

      Gary-you are entitled to copies of all tests, records, x-rays and the nerve conduction tests. I recently asked for copies of all my neurological records and received them promptly. Then I asked for copies of all my lab tests. My reasoning was because I saw that in less than a year my WBC count had dropped dramatically and so had the absolute neutrophils. They were very abnormal. I was sent to a hematologist-oncologist for further testing. Bottom line is I saw it but the Dr. had never caught it. As it turned out I was switched from Gabapentin to Lyrica and now the WBC’s are back to normal. I can stay on top of things if I have the records. I figure I am my own advocate.

    • Anonymous
      November 21, 2010 at 5:18 pm


      I was told that an extreme lack of B-12 can cause demyelination. Lack of the intrinsic factor probably means you are going to need to take the injections for the rest of your life. If you do not self-inject, then you need to learn how.

      There isn’t a whole lot of difference between what CIDP looks and feels like and a severe B-12 deficiency. It may be that you had B-12 deficiency all along and you never had CIDP. I hope that is the case for you.

      It takes several months of injections of B-12 before you will begin to see a difference in sensory or motor nerves, but you can regain most of your nervous system functions after a year or two. Some people have daily B-12 injections for the first two or three weeks after being diagnosed with B-12 polyneuropathy, then weekly injections for a couple months, then monthly injections after that.

      Your nerves will not begin to heal until your B-12 levels are higher than 450 to 550 parts per million. The good news is that B-12 polyneuropathy with negative intrinsic factor offers a better chance of full recovery than CIDP.

      Good luck to you.


    • November 22, 2010 at 11:08 pm

      Thanks for the well wishes Lee, but there’s no doubt I have CIDP.

      I was positively diagnosed with CIDP from EMG and lumbar puncture July 2008. I just continue to post updates on my CIDP journey in my original thread for posterity’s sake.

      (And reading the entire thread from time to time is sobering and reminds me of my feelings along the journey).

      And J. Thank you for the suggestion of getting my records. That’s a great idea. I will request them. Gary


    • February 4, 2011 at 10:41 am

      Wow, it’s been awhile since I’ve last posted an update. I’m still on plasmapheresis treatments (two every 6 weeks on consecutive Fridays, the 5th week and the 6th week). I’m still doing quite well. I’m still exercising and lifting weights regularly. I’ve eating too much junk and my metabolism is slower, so I’ve gained weight (an extra 20 lbs). I’m doing 50 minutes on the elliptical machine and 10 minutes on the treadmill several times a week and my diet is improving so I hope the weight will continue to come off and I’ll have my girlish figure back soon.

      The CIDP flared up several times during January and I probably should have gone in for my treatment on the 4th Friday, but I waited and felt crummy. I didn’t realize until after the PE just how far the numbness had progressed on my feet and hands. Even this week I’ve not recovered as quickly as usual. So the PE this afternoon is welcomed. Hopefully the numbness will repair quickly after this second PE.

      We have a lot of iced roads here and getting to the hospital will be a challenge today. I’m concerned with my wife driving home afterwards; so prayers for a safe journey and that I’ll be able to drive home would be appreciated. I’m hoping our AWD Outback will make the journey uneventful and safe. But Houston drivers and ice don’t mix well. 😮

      One new thing and question for y’all … I’m experiencing a lot of shoulder pain mostly in the left shoulder … I’ve dropped down on my wieights (30# curls, 240# bench) … it seems to be muscular or tendonitits and not joint … I’ve had some flexability and range of motion issues … small muscles in my shoulder are tender to the touch … certain motions are painful … my neuro says it’s tiny muscles that control rotation and urged me to drop down in weights … it came on suddenly and has been around for a couple of months … makes me think it may have a CIDP link … have any of you experience shoulder issues such as this?

      May God bless you all,


    • Anonymous
      February 4, 2011 at 11:49 am

      Gary, I did have issues in my left shoulder following our first road trip to Rochester, Minn in the fall of ’09. One of my duties as passenger-navigator was reaching behind the driver’s seat with my left arm, picking up from the floor the one gallon, or so, water bottle and then refilling our traveling drinking cups. Additionally, my right arm is severely atrophied forcing ‘overuse’ of the left.

      The following March, on a return trip to Mayo the left shoulder MRI indicated tendinopathy. Round after round of P/T, Time, lots of time and lots of rest were the only solutions offered.

      I guess I agree with your Dr.- cutback in frequency, intensity and duration of your upper body workouts.

    • February 4, 2011 at 4:07 pm

      HI Gary,
      Good to hear from you and wish you well. Don’t be afraid to follow the doctor’s solution and rest the injury completely for awhile. Give it plenty of time to heal. You will gain a lot by allowing the healing. Later when you start exercising again just start doing a little and taking it easy and adding more exercise in small increments so you won’t reinjure yourself.
      The muscle and tendon will come back in it’s own time with TLC and you will be as good as new. What you lose by patiently resting will all be regained once you ease back into building up again.
      I had to completely baby my badly injured left arm and it paid off.

    • Anonymous
      February 5, 2011 at 3:51 am

      Hey Gary. It is nice that you have a thread that tells a story over time and that you keep it going.

      All my fun with this process started with left arm pain that eventally went to my left shoulder and then my neck and then, bam, I got the tingling and inability to walk right and got told I have GBS. Now, it is thought that the shoulder was not really part of this–that it was an injury and I hope this is true because the shoulder pain started about 6 months before the “crash” and if it is part of this, it would be a CIDP presentation and I am hoping that this was GBS. BUT, the weakness of GBS/CIDP definitely contributed to the shoulder pain and made it worse and I had seen a physiotherapist/rehabilitation specialist just after discharge from the initial hospitalization and he said the shoulder was hurting from myofascial pain and did a trigger point injection which gave me 95+% relief. The pain in the shoulder and neck was so bad I could not sleep. Then I got PT for the “frozen” shoulder. If your muscles have a specific point that is really tender, this is something to think about. Overdoing them can lead to inflammation that sets up a cycle that is hard to break especially if there is weakness there.

      I have been thinking about this recently because my arm/shoulder is again hurting. This got me a little worried (?CIDP), until I kind of connected that I am back to carrying heavier stuff whereas for the last four years I have used a rollator walker with a seat to carry books and papers and heavy stuff that I carry back and forth from work to home. I decided last fall not to use the rollator walker as much and have not used it at all in 2011. So my problem is likely stubbornness and not CIDP!!! Anyway, you could think if you are carrying more or have myofascial pain. The shoulder is a remarkable joint, but the complexity of its design is that weakness in one set of muscles can lead to imbalance and injury/pain. We are wonderously made even as we push the limits of that sometimes.

      God bless you,

    • April 16, 2011 at 12:17 am

      I had my 4 month check up today. My neurologist was so encouraging and pleased with my muscle tone recovery. I have made a remarkable come back, but continue to battle CIDP. I had a PE this afternoon (4 weeks since my last one). The inflammation in my toes, fingers and lips is still cyclical. The motor function in my right leg and right arm still suffers some in between PE cycles, but not significantly.

      His response to the two questions I had for him was surprising. The two questions were: Sometimes along with the inflammation (burning) in my toes and fingers I have a headache; also the strange smell of sulfur or “something hot” happens also. He said that indicates I probably have central nervous system involvement too; some myelin involvement in the brain (similar to MS). Very rare, but not unprecedented. (How unlucky can a fella be??? Extremely rare disease and a rare variation to boot!)

      Just wanted to pass this along for the Foundation Forum documentation. He said that maybe someday they’ll figure this disease out …

      Keep praying someday is soon … Gary

      PS apologies for not visiting more often … teaching a Sunday School class and participating in CBS Bible study leadership … working 10+ hours a day (I’m on a 4X10) schedule … alright I know excuses excuses. I’ll try to be more faithful to y’all. 😮

    • Anonymous
      April 25, 2011 at 5:20 pm

      After years of various doctors, including neuros, my wife was sent to USC in Los Angeles where the doctor (Dr King Engle) did a deep muscle biopsy, spinal tap and drew 23 vials for blood work up.

      The diagnostic work proved she has CIDP + Polyneuropathy. The biopsy showed zero nerve recovery.

      She had previously been diagnosed with missing the intrinsic factor for B-12. We think it may be connected to a hemi-gastrectomy she had many years before, for which I was giving her injections.

      So she does have both as does Gary. The diagnosis was in July 2004 and he started her on IVIG immediately and she has continued it since. Unfortunately she continues to decline and currently has 10% left in legs arms and hands.

    • May 10, 2011 at 10:05 pm

      Dear Old,

      Sorry to hear of your wife’s continued decline and that she’s been battling CIDP since 2004. Please pass along my cyber hugs to her and let her know she’ll be in my prayers.


    • June 1, 2011 at 7:54 pm

      My PE last Friday went well. I was on the new machine and the PE lasted right at an hour (new record for me). I didn’t experience any adverse effects either. My shoulder pain is almost gone. I decreased my upper body weights and increased the reps dramatically; consequently my bursitis has almost cleared and I’ve maintained or increased my muscle tone and strength. I still have a little mobility issue in the left shoulder though. I bought some new irons (Calaway X-22 tour) and spent last Thursday lunch on the driving range. I won’t part with my Wilson FG-17’s, but the Calaways seem to take off hits much better … and I don’t hit the sweet spot quite regularly as I used to. (Sorry about the golf prose; please excuse an old golfer getting carried away.)

      I have my next PE this coming Friday (still on the two PE’s every 6 weeks on back to back Fridays treatment protocol). But I made it relatively easily to the 5th week this time and even felt quite “back to normal” at times.

      I radically changed my diet and have lost over 10 pounds … I think the diet change contributed to how I felt. So I’m sticking to it.


    • February 6, 2012 at 12:18 pm

      Wow, has it really been 250 days since I last posted? I’m still being treated by PE alone (2 PE’s every 6 weeks on back-to-back Fridays). My health, fitness and symptoms have stayed relatively the same. I’m staying very busy with work, Bible study, teaching Sunday school, and travel.

      My last PE was last Friday at Methodist Hospital Blood Center Houston. The blood center was very busy and I waited 1.5 hours to get in. There was a young lady there with sickle cell anemia, another young lady with a lipid or platelet blood issue, a fellow with a trache, and another woman undergoing PE. There sure are a lot of folks who has it pretty tough. Made me again count my blessings (having CIDP stinks, but I am blessed).

      I remember my neurologist’s objective from my diagnosis was to get me to the point that “CIDP isn’t the focus of my day”. And there are times I don’t even think about CIDP during the day, but it’s with me daily and there’s not a day that goes by that I haven’t thought about having CIDP. However, CIDP isn’t the focus of my life (thank you Dr. Mosier).

      May God bless you all,


    • Anonymous
      February 21, 2012 at 10:35 pm

      Hi, my wife is currently in hospital with CIDP and the Doctors are concerned that she has a high B12 reading >1600? Has anyone any thoughts

    • February 22, 2012 at 1:53 am

      has she been taking b-12 supplements or drinking a lot of the high energy drinks that contain b-12?

    • November 20, 2012 at 2:02 pm

      My wife and I were in an automobile accident 7 weeks ago. A 16 year old blew a traffic signal on a 50 mph highway we were crossing to enter into our subdivision. The crash was so violent our Outback ended up upside-down. My wife’s pelvis was broken in 5 places and she is still in pain and recovering. I was treated and released by our local hospital, but she was taken by ambulance to a Houston trauma center. I started experiencing headaches, dizziness, and weakness in my legs a week after the accident and went to my neurologist. He ran a battery of tests and the MRI/MRA revealed I had a subdural bleeding. I have had some concentration issues since the accident (concussion related). The reasons I post this are: 1) any additional trauma is extra tough on CIDP patients; avoid it if at all possible; 2)  we owe our lives to side curtain impact air bags (and Subaru vehicles crash ratings); and 3) we are so thankful for our family, church family, and friends who have provided for us during this accident and our God. I realize how blessed I am to have my wife and how much she does for me; taking care of her, cooking, cleaning, laundry, bathing, house work, has worn me out. This Thanksgiving our kids are cooking for us; our kids are wonderful.

      I continue to have 2 plasma exchanges on back to back Fridays every 6 weeks. I continue to lift weights, but my walking has gone down since the accident.  I’ve gained weight (due to the accident and the great meals our friends have provided (and the desserts; we usually don’t eat much dessert)); the extra weight has increased my BP.

      Praying healing for you all and a blessed holiday with your families.


    • November 21, 2012 at 9:28 pm

      sorry to hear of  the accident Gary—I wish you and your wife a speedy recovery.  Despite all you are going through

      I hope you have a nice Thanksgiving with your family.

    • Anonymous
      December 6, 2012 at 5:43 am

      Gary – I am newly diagnosed with CIDP and this was the first posting that I read through here on the boards.  I am praying for you and your wife.  Please get rest, as you can, so you don’t over do as you take care of your wife.  I am sure you know how over doing will set you back and not allow you to take care of your wife as she recovers.

      I have to tell you that you statement from your Dr of “”to get me to the point that “CIDP isn’t the focus of my day”” and the fact that you reached that point is SUCH an inspiration to me.  Like I said, I am newly diagnosed and although I have been struggling with what I now know was CIDP for at least 2+ years I take hope in the fact that I too may one day get to the point where CIDP isn’t the focus of my day.

      Thank you for that inspiration and light in my day today.  Best of luck in your continued recovery and good luck to your wife as she recovers as well.


    • December 27, 2012 at 5:25 pm

      Thanks Lori … Thanksgiving was wonderful. Thanksgiving evening here was clear and cool. My sons and I pulled out my telescope (8″ Meade LX200GPS) and took some photos of Jupiter and the Great Nebula in Orion. It’s amazing to realized how vast the universe is and how long the light from distant galaxies has been traveling to reach earth. And yet the Bible tells us there has never been a place or time that God wasn’t there. (Just blew a circuit in my brain).

      Michelle, I pray that you too will very quickly get to the point that CIDP isn’t the focus of your day, but an occasional thought.  Unfortunately in most cases CIDP patients have to be their own advocate; so I urge you to keep pushing/pressing your neurologist to get better and better. Don’t accept where you are as “good enough” .

      Thanks for the well wishes; my wife and I are doing much better. She is walking with a cane and I rarely have headaches. Fatigue has been an issue, but I’m back to lifting weights and walking (hopefully this weight will start to come off now).   

      Praying that during 2013 a cure for CIDP will be found and you all will have a healthy, prosperous, and blessed 2013.  


    • July 9, 2014 at 7:31 pm

      Update 7/9/2014… Still continuing with plasmapheresis treatments 2/6weeks on consecutive Fridays. The plasmapheresis treatments continue to be effective. Changed neurologists a couple of times (my previous favorite is now full time with the VA). The second neurologist also went to the VA (I only saw her one time).

      I continue praying for remission or a cure, but so far patience is my answer.


    • May 28, 2015 at 8:21 am

      Update 5/28/2015… Still continuing with plasmapheresis treatments however my neurologist has me scheduled for 1 treatment every 5/6 weeks (so far I’ve stuck to the every 5 weeks treatment schedule. The CIDP flare up between treatments led me to journal initially. Flare up symptoms: flu like symptoms; headaches; burning lips fingers and toes; numbness in fingers and toes; weakness/fatigue; twitching in legs; pain in feet; metallic/flint smell. Noted some diminished motor function in right leg, affected gait imperceptible to anyone but me. However, it seems my body is tolerating the new treatment schedule better with time. The neurologist says if I tolerate the 1/6 weeks schedule, he’ll pronounce me “in remission” and stop the treatments altogether. I’m skeptical because of the flare ups, but hopeful. The new treatment schedule is more convenient for my schedule and much less expensive.

      I continue to work; I’m on a 4-10 work schedule which also is convenient for treatments.

      Personal note: toured China in April (amazing trip). Expecting 1st grandbaby in July (granddaughter). Just finished teaching Community Bible Study’s 1st and 2nd Corinthians study; breaking for the summer; I’ll start teaching CBS’s “return to Jerusalem” study in September.

      I pray for God’s healing for you all.


    • August 10, 2017 at 10:35 am

      Hello Gary,
      I know it’s been years but I’m wondering what ever happened? Was it a B12 deficiency or CIDP? I’m in the same boat now except I’m deficient in all B vitamins. The pernicious anemia forum I’m part of reports neurological muscle issues get worse before they get better once you start B12 doses. Mine did. So much that I was diagnosed with CIDP.