• March 16, 2011 at 11:39 am

      Hi, I am dealing with getting diagnosed for CIDP. I am a 46 year old female who is very active and healthy until recently. In November, about 2 weeks after having my flu vaccine my foot went numb. I didn’t think much about it, maybe a pinched nerve. But it persisted and started to hurt too. I went to my GP and she ordered an MRI for MS lesions. Negative on the head MRI so she sent me to a neurologist. She did an EMG and said that both my feet are not conducting right – she said moderate demylinization (sp?). She mumbled something about CIDP and then sent me to the lab for about 16 blood tests. She tested everything under the sun and everything came back in normal range. So now she said probably idiopathic CIDP and ordered a lumbar punch which I am scheduled to have at 1 PM today (very scared for this test too). Anyway, I am very scared. Both my legs seem weak in the morning and shakey. My hands seem sore on the top of both hands too. But other than that I don’t have any other symptoms. The weird thing is that after I lay down and go to bed all symptoms go away completely. But come back right away upon standing up. Now i have horrible anxiety and depression because I feel I will never have a normal life again. I am so scared of progressing to the point I lose my mobility and independence. I have a 7 year old daughter who relys on me for everything. I am a very active mom and so upset that I cry in silence when I am alone a lot. I just break down and sob so hard. My daughter has been asking me lately why i have water in my eyes. I try to put on a happy face with her and say I am fine. But I am not fine. I am so scared. If my LP todays comes up negative for the CIDP protein then what. Do i just wait and see if i get worse? But isn’t that a bad thing becasue won’t my immune system do more damage to my nerves the longer I go untreated? I am starting Pred at 40 mg twice daily for two weeks to see if i respond to that. I am going on a family vacation to Florida in two days and I am just not excited because I am so scared. Has anyone had CIDP and was diagnosed early enough to stop it from progressing and keeping it mild enough to just have some mild symptoms or does it usually progress to loss of legs and arms? I am just at a loss right now and frightened.

    • March 16, 2011 at 12:18 pm

      You have lots of things going on! My now 14y/o was dx when he was 9. First things first, regarding your vacation, I might reconsider, especially until you get the l/p results. Are you flying? Maybe if there is still time, you can add insurance to your trip so that you can be refunded if need be. If it is cidp, you might want to be close to home. On the other hand, if it is cidp, you are on prednisone, so that may be helpful. Regarding the prednisone, in case the doc did not explain it to you, it is very important you take it as directed and DON’T stop it on your own. You have to be weaned off of it. If you are diabetic, steroids could pose additional problems. The problem is, you do not know if it is cidp, gbs or something else. For example, steroids do not work for gbs, as well, not all people w/cidp respond to steroids, some actually get worse. Your comments about feeling better after you rest could indicate gbs, in the begining, my son was PROGRESSIVELY weaker each day, for about 4-6 weeks before he was paralyzed in picu for days. On the other hand, a crucial thing to remember when dealing with cidp is that no one progresses or responds to treatment the same way that another does. CIDP has many variables in its presentation, dx and treatment.

      The anxiety, depression is totally normal, not knowing what is wrong with you is frightening, not knowing what is ahead is frightening. Yoou have to be strong and persistant so that you can get to the answer of your problem as quickly and efficiently as you can. If it is cidp, there are many treatment options depending on what you respond to best. We get ivig, aka plasma. It has worked wonders for us, but requires us to be infused every two weeks with tweaks along the way. It is time consuming, expensive regarding what your insurance co pays out, deductables, copays etc. But it is relatively safe. There is plasmapheresis, a process that basically cleans your blood and gives it back to you (just a quick way of explaining it, it is involved as well) Of course there are steroids, which are not a long term solution. A variety of imunosuppressants are availabe, some have taken chemo drugs and had great results and some are currently involved in a trial that involves chemo to wipe out your immune system, harvesting of your own stem cells and then giving them back to you. The process like the others is much more involved, this is just a quick explanation to ease your fears that there are options out there to combat cidp.

      I would be lying if I said it is easy and everything gets back to normal, but it does get better and along the way you learn to adapt and carry on. It takes time.

    • Anonymous
      March 16, 2011 at 2:22 pm

      I’m so sorry to hear what you are doing through. I am in the same boat as you, just a little further along. Just diagnosed a week ago based on the spinal tap protiens being high, along with the EMG etc. Getting my first IVIg treatment next week. Hopefully your Dr will get you the correct diagnoses soon so you can get on the right treatment path for you. I will say I did get a spinal tap headache after the spinal tap and had to do a blood patch procedure as a result. Not fun, but was able to go to Mexico for a schedule trip about 10 days after the spinal tap as I was fine by then. I would say if you are feeling good and your doctor okay’s it you should go on you vacation and try to relax as that may help you with your anxiety and depression. My dr. offered me depression/anxiety medicine at my diagnosis visit but I declined at this point. I have been on that before and it did help me in the past and if I start feeling depression again will go back on. Keep us posted on your progress and hang in there.

    • Anonymous
      March 16, 2011 at 3:51 pm

      Please see my response to your post on the Main Forum

    • GAT
      March 16, 2011 at 7:05 pm

      Several opinions. seems the spinal in an important test to help determine diagnosis. There not fun but if it gives you a good answer then worth it. I had no pain afterwards. This stuff affects people differently and varied. IVIg saved me. My five day loading dose gave me a flu like symptom. Once the infusion center knew that they slowed the rate and all symptoms went away. I look forward to my infusion of 40 g every 28 days because it gives me relief The one thing I didn’t know about and was not expecting is how this stuff can affect you mentally. Talk with your Neurologist and let them help you. my issue is related to the side effects of steroids as a per medication for the IVIg. When I knew I was snappy to my wife and kids I ask for help and started very low and slow and deal OK now. Keep the faith.

    • Anonymous
      March 16, 2011 at 11:55 pm

      I am also fairly new to the diagnosis of IVIG (July 2010). I had a lot of inconclusive tests (lumbar puncture, numerous nerve conduction studies, MRIs of brain and back and neck, 40+ blood tests) done by various doctors, so my current neuro recommended a biopsy of the sural nerve (lower leg) and also biopsy some muscle in the area. I was so frustrated after four years of going to various doctors (including another neuro) and they could not figure it out. I hated not knowing what I had. You also begin to question your own sanity after a while. After I got the pathology report from my neuro I actually felt relieved to have CIDP. There was no doubt left when the pathology report arrived. Before the diagnosis I read a lot of medical stuff that was really scary. I decided at that point that I would try to keep a positive attitude. I am lucky that I have a lot of support from friends and family as well as colleagues at work. Yes, I still work full-time even though some days it is difficult to walk. But I keep on going and do as much as I can. My advice–treasure each day and be an advocate for your own health. Being part of this forum is helpful in learning more about CIDP and also it allows you to ventilate—and that is therapeutic. It is comforting to hear from others with similar problems. Always remember that CIDP symptoms and effective treatments vary with each of us. For example: my feet are numb all of the time, even when I lay down. I wish you the best.

    • Anonymous
      March 17, 2011 at 12:02 am

      I know that it is time to go to bed!!! I proofread my response to your thread and I did not catch it. I was not diagnosed with IVIG, but CIDP. Ha!

    • Anonymous
      March 17, 2011 at 5:42 am

      how did the lumbar puncture go?

    • March 17, 2011 at 9:20 am

      The lumbar punch was not bad at all. My doctor guided the needle into the spine with the help of an xray machine (floroscope). The most pain was the injection of lidocane. Then I felt some uncomfortable pressure in my back as he was inserting the needle. It took about 15 minutes for the CFS fluid to drip out slowly to fill the 8 cc needed. But then it was done. I stayed at the clinic for an hour laying on my back. I also downed a big cup of coffee and a diet coke for the caffine. Somewhere i read caffine might help stay off the spinal headache. Then I layed low for the rest of the day staying pretty much on my back. Today I am at work. Somewhat sore back but not unbearable at this point. I am worried I will get the spinal headache and won’t have a good time in Florida (I leave at 7 AM tomorrow morning). If i were to get the headache would it come on today or could it come on days down the way? Does anyone know. If I don’t get the headache today (one day after the tap) then am i in the clear and probably won’t get one? I would sure hate to get one once I am down in Florida.

    • March 17, 2011 at 10:08 am

      everyone responds differently, we had the headache about 6 hours after. the fact that you layed on your back all day is very helpful. are the steroids helping? Good luck, keep us posted

    • Anonymous
      March 17, 2011 at 10:33 am

      Chirpy Birdy,

      I feel your pain. I had a vaccine injury in Nov 09 from the flu vaccine. Similar symptoms. I was worried about GBS/CIDP/MS, you name it. I never had the lumbar puncture. Lost my reflexes, had arm weakness, lost 25 lbs. You will find my story under the vaccine injuries. Never had any treatment because my symptoms were not considered severe. Had severe anxiety/depression/suicidal thoughts. It is part of the disease and the reaction. Your nerves have been affected. I have a 3 yr old and 5 yr old and was totally fine before the vaccine. I improved over the last year very slowly. Would have relapses of fatigue every 3 months or so. Have been working the whole time. I had to work at home for the first month because I felt so terrible. I have been able to have a “normal” life. I am not back to where I was before the vaccine, cannot exercise, etc. Right now, I have taken a downturn for the worse. I had some major stressors recently and have developed joint pain. I did not have joint pain before. So now, I am going to the dr trying to figure out if I have RA, lupus, fibro, etc. I think that you will get better and you will get back to a normal life, but it will take time. The best advice I can give you is to rest as much as possible, keep your stress level down, seek help from a therapist, and take antidepressants. I see a therapist weekly and I take Xanax, antianxiety med, but I react negatively to antidepressants, low blood pressure, etc. I would recommend getting some Xanax if you start to have panic attacks. One day at a time is all I can tell you. You have to have hope and focus on getting better. If you want to talk, Private message me and I can call you.

    • Anonymous
      March 17, 2011 at 11:04 am

      After my spinal tap, I was forced to lay on my back for about an hour and then was told to take it easy for the rest of the day. They gave me coffee and juice. I walked out of Baylor Hospital without problems and had very little headache afterward. The next day I got on an airplane bound for China—not on vacation but for my job. I had no problems related to the procedure while I was there for three weeks.

    • March 17, 2011 at 11:09 am

      thanks, that is encouraging. So far, so good. At work since 7 AM and no sign of a headache. I am trying to not move around too much and just sit at my desk for the day. I don’t know what causes the headache to come on but if it is movement then I am trying to keep mine to a minimum.

    • Anonymous
      March 17, 2011 at 11:48 am

      I got the spinal tap headache about noon on the day following my procedure, which was at 1 the day prior so it came on at 24 hours. Lated about 5 days even with the blood patch done on day 3. It was really bad so you will know it if you get it. Good news is it was much better when laying down. Sounds like you are doing well and hopefully in the clear of getting any headaches. Hope you enjoy Florida.

    • Anonymous
      March 17, 2011 at 4:52 pm

      I had my LP on Thursday morning. I was fine until I got a severe headache on Monday morning–4 days afterwards. I didn’t do anything strenuous on any of the days prior to my headache. I drank coffee on Monday & drank a lot of fluids. This helped me.

    • March 17, 2011 at 4:56 pm

      So far, so good. No spinal headache and 24 hours post spinal tap. I have been drinking coffee and caffine colas all day trying to stay off the dredded headache. I did come down with a throbbing headache earlier in the day but it did not go away when I was laying down. It was with me for a few hours and now it is gone. Wonder if that headache was due to starting prednisolone today?? Anyway keep fingers crossed I don’t get the dredded headache when I am down in Florida on my vacation. If I do I would have to miss out on the beach and fun with my 7 year old daughter and she would have a hard time understanding why mommy can’t come with and have fun. I have been at work all day today but really have not done anything but sit at my desk today. Take care.


    • March 16, 2011 at 11:14 am

      Hi, I am dealing with getting diagnosed for CIDP. I am a 46 year old female who is very active and healthy until recently. In November, about 2 weeks after having my flu vaccine my foot went numb. I didn’t think much about it, maybe a pinched nerve. But it persisted and started to hurt too. I went to my GP and she ordered an MRI for MS lesions. Negative on the head MRI so she sent me to a neurologist. She did an EMG and said that both my feet are not conducting right – she said moderate demylinization (sp?). She mumbled something about CIDP and then sent me to the lab for about 16 blood tests. She tested everything under the sun and everything came back in normal range. So now she said probably idiopathic CIDP and ordered a lumbar punch which I am scheduled to have at 1 PM today (very scared for this test too). Anyway, I am very scared. Both my legs seem weak in the morning and shakey. My hands seem sore on the top of both hands too. But other than that I don’t have any other symptoms. The weird thing is that after I lay down and go to bed all symptoms go away completely. But come back right away upon standing up. Now i have horrible anxiety and depression because I feel I will never have a normal life again. I am so scared of progressing to the point I lose my mobility and independence. I have a 7 year old daughter who relys on me for everything. I am a very active mom and so upset that I cry in silence when I am alone a lot. I just break down and sob so hard. My daughter has been asking me lately why i have water in my eyes. I try to put on a happy face with her and say I am fine. But I am not fine. I am so scared. If my LP todays comes up negative for the CIDP protein then what. Do i just wait and see if i get worse? But isn’t that a bad thing becasue won’t my immune system do more damage to my nerves the longer I go untreated? I am starting Pred at 40 mg twice daily for two weeks to see if i respond to that. I am going on a family vacation to Florida in two days and I am just not excited because I am so scared. Has anyone had CIDP and was diagnosed early enough to stop it from progressing and keeping it mild enough to just have some mild symptoms or does it usually progress to loss of legs and arms? I am just at a loss right now and frightened.

    • Anonymous
      March 16, 2011 at 3:38 pm

      CIDP is not a death sentence. Yes, it is a chronic neurological disease and is to be taken seriously. Yes, it has the potential to cause significant damage. However, there are treatments out there, and most people seem to find a treatment regimen that works to at least some extent to combat the progression and symptoms of CIDP.

      Like you, I was an active person in my late 40’s when my left foot went numb, followed by my right foot. My hands were then affected. I also went to my GP who put me through a battery of tests, all of which were negative. Luckily, I then saw a great neurologist who diagnosed me quickly and accurately in April of 2010. We started aggressive IVIG treatment that month and I had an immediate positive response. Nearly a year later I am still on the IVIG. I have very little pain, a little numbness in my feet (worse on the left) some hand tremors and clumsiness, and a little fatigue (which could come from the Lyrica I take for pain). I live a full life. I work full-time as a trial attorney. I travel extensively for business and pleasure. I lift weights. I have no restrictions on my physical activities. I have acclimated myself to living with my CIDP, and other than my infusions and taking my medication for pain, have not had to modify my life one bit.

      Please try to keep a positive attitude. I know the anxiety and depression that a CIDP diagnosis can cause. I’ve been there. Many live a near-normal life with CIDP. Please keep that in mind. Use this forum; I guarantee you someone (and often many) have been through everything you are and will be going through. Over the last year I have learned that fear is the greatest enemy I have, and most of what I feared never happened. I wish you all the best. Keep in touch.:)

    • Anonymous
      March 16, 2011 at 11:00 pm

      Chirpbirdy your symptoms sound pretty mild thus far and it is very positive that you feel fine after a rest. Don’t scare yourself by imagining the worse. Hubby has fairly severe CIDP with motor symptoms and atrophy and drop foot and I have MS. We both live good lives, and are happy people. Attitude is critical to managing the disease. You’ll do fine –just do lots of reading and empower yourself with good accurate info. and trust your doctor. Good luck.

    • March 17, 2011 at 8:49 am

      Thanks for the encouragement. It helps to see that it is not always so horrible and that maybe my life won’t change so drastically.

      I had my spinal tap yesterday. It was not bad at all. I was so scared that it would hurt very much. It was uncomfortable mostly. The doctor was very gentle and he used an xray machine called a flouroscope (sp?). It was cool because I could see him inserting the needle in my spine on the computer screen. He said this makes the procedure much less painful and less scary. Now I just have to wait and get the results.

      I have never had a MRI of my spine, only my head. Should I ask for one if the proteins in my CSF fluid are negative to see if maybe there is possibly something going on in my spine causing the numb leg and fully gait.

      I feel gittery today. My back aches and I have a very sore right leg, it feels like a bad charlie horse in my calve muscle. I just started 20 mg prednisolone this morning. Does anyone know if you can take Ibuprofin with prednisolone? I guess I should call the pharmacy before taking anything with the prednisolone.

      I kind of want the LP to be negative for the proteins because then, just maybe i don’t have CIDP but then I kind of want a positive protein because then I have a real diagnosis and I can maybe start the IV drug infusion that I hear about that helps slow the symptoms. I just don’t know where to go after I get the results if they are negative. Do i just ignor the symptoms and hope the go away or do i keep insisting it is CIDP and ask to try and start the infusions?

      Confused and still scared but feeling a little bit better. Now if only my back would stop aching. I have to get on a flight tomorrow morning at 7 AM for a much needed vacation in Naples, FL. I just hope I don’t get the spinal headache from the LP i had yesterday.

    • Anonymous
      March 17, 2011 at 10:38 am

      You are not supposed to take ibuprofen with the Prednisone. I am taking 10 mg now and the nurse told me not to take anything else while I am on this, but you should check with them.

    • Anonymous
      March 17, 2011 at 10:49 am

      Chirpy, I am glad the lumbar puncture went well. Sounds like your doctor is very careful using the scope while doing it. Don’t overdo things for the next day or so–try to lay down as much as possible to keep flat until your body produces more spinal fluid to replace what was taken out. Don’t know the answer about the safest analgesic to take with prednisone. Take care.

    • Anonymous
      March 17, 2011 at 4:31 pm

      God bless you chirpybirdy. It has to be a tough thing to deal with especially when you have young children, we don’t. What has helped me to keep perspective is that my next door neighbor lady that was my age, (I’m 49)suffered and died from MS and a man at our former church died from ALS. In the beginning there was thoughts that maybe I had ALS but tests and some symptoms ruled that out. So I thank God frequently that I don’t have something worse. I also have people in my life that love me and care about me. I don’t know you but I care about you and the struggles that you’re enduring, your post really moved me. I shall continue praying for your situation. Wishing you and yours the best, Johnny3

    • Anonymous
      March 17, 2011 at 6:26 pm

      My understanding is that the lumbar puncture results are just one piece of the diagnostic puzzle when it comes to CIDP. No one single test is definitive, although EMG/NCV results showing nerve demyelinzation comes close. You can have CIDP without necessarily having increased spinal fluid protein. On the other hand, if you do indeed have the increased spinal fluid protein, that tends to confirm the CIDP diagnosis.

      Under no circumstances should you ignore your symptoms and just hope they go away! You are exhibiting abnormal neurological symptoms which need to be evaluated and treated NOW. Keep in mind that the sooner you commence treatment for whatever condition you have — especially if it is indeed CIDP — the better off you will be. I went through denial to some extent when I was first diagnosed, and it is common. But you still need to take care of yourself, for your sake and the sake of your family.

    • March 17, 2011 at 10:17 pm

      I agree with goodney in the part about there not being just one piece of the puzzle. My case was GBS, although it took them 3 days for a final confirmation. I had tingling of the fingers and hands the whole day prior, and passed it off as carpel tunnel of the wrist, although I was off my feed that day. The following morning at 4am I stood up from the bed and the nerves that tell my knees how to work were already demylinated, so I ended up on the floor, with no use of my legs. The rest of my body didn’t feel all that bad at the time, however, it didn’t take long from the time the wife took me to emergency at 5:30 am, that the rest of me became immoble. No two people come down with it or recover from it the same way, that is for GBS. I talked with a GBS’er ten years out at the hospital, ( he was in for a mild stroke ),and for him, it took 3 weeks till onset, and his made it up to his waist, whereas mine went all the way up to the brain.
      Good luck to you.

    • March 28, 2011 at 9:27 am

      I have my follow up appointment today at noon with my doctor to see what they found on my spinal tap. I have been in Florida all last week for a vacation and have been worried about what they are to find on the fluid results. I tried to have a normal vacation and put my health problem on the back burner since there was really nothing I could do to change my situation but it was hard. I have been on prednisolone 40 mg now for about two weeks. Now I am not sure if the weird feelings are from the pred or my disease progression (if I do indeed have CIDP). I feel very jittery and hyper all the time. My hands tingle now on the top of the hands and they feel very shakey. My knees hurt (in the joints) all day long but subside when I sit down for the end of the day. My legs also feel somewhat shakey too like I am on large doses of caffine. I can’t sleep at all and am having weird dreams when I do sleep (taking melatonin to help at night). Can someone share their thoughts on side effects of prednisolone with me? Now I don’t know if I am obsessing on every little weird feeling and making everything worse or if I am really having new side effects. I just want to be back to normal and not have this thing! Ugh!

    • March 28, 2011 at 10:23 am

      You ARE NOT obssessing. Those would be the side affects of the prednisone, regarding the sleep issues. You probably will be getting really crabby, aka as roid rage, you may start getting acne and your face will appear round, as well as weight gain. Regarding the other issues you mention, it is hard to distinguish if those are cidp symptoms or, the steroids. Some people actually worsen with the steroids regarding the cidp symptoms and the steroids are counterproductive to this group. Others respond wonderfully to them and the inflamation / pain is knocked out. You will have to discuss with your doc.

    • March 28, 2011 at 10:49 am

      Thanks for the update on pred side effects. I am planning on getting off this stuff soon. I have an appointment with my doctor today to disccuss future plan but I know for sure I don’t want to be on pred long-term. Too discusting of a drug with horrible side effects. I don’t have as much pain since on the pred….actually some pain still but different pain. Instead of bone pain it feels more like leg cramps. Wish me luck with my doctor appointment today.

    • Anonymous
      March 28, 2011 at 11:19 am

      Good luck with appointment! Perhaps discuss getting the steroids in pulse doses–seem to be less side effects that way. Let us know how things go.

    • March 28, 2011 at 11:27 am

      Chirpy bird,
      Whatever you do , DO NOT TAKE YOURSELF OFF OF THE STEROIDS, it has to be done properly, slowly, you have to be weaqned off of them. Your doc will help you. Let us know your results. In an earlier post you said you hope it is not cidp, just so you know, if it is, it is not a death sentence AND there are treatments. The people here will help you if you want the help. Good luck today

    • Anonymous
      March 28, 2011 at 2:15 pm

      I came down with a very severe case of CIDP back in 2002 & was inpatient at Mayo when it was decided to finally try steroids on me. I didn’t do the oral, instead they started me out with 1,000 mg of solumedrol for 5 days straight, whic is prednisolone, but still steroids. Before they even began, they sent a shrink to talk to me about what I would be feeling on the steroids. He warned me about feeling very agitated, extremely talkative, nervous, difficulty sleeping, even suicidal thoughts. 40 mg a day is a high dose to be given without these warnings. At this point, I believe your biggest problem is the steroids. If you get a diagnosis of CIDP I do hope your neuro will try IVIG instead of steroids, or at least put you on steroid infusions (solumedrol.)

    • March 28, 2011 at 4:52 pm

      I had a good meeting with my neuro today. I was diagnosed with CIDP – not a difinitive diagnosis but she really thinks that is what i have based on all my lab results and my lumbar puncture showing protein in the fluid. She wanted to do a nerve biopsy to confirm the demyelination – which i declined. From everything i read on the biopsy it is horrible and it causes permanent damage to the foot and sometimes permanent pain. So since that can also be negative leaving you with still no actual diagnosis I said no. Since the prednisolone is so horrible she decided to taper me off over the next week or so and stop that. We are going to try two IVIG infusions to start out and see how I respond. I am hoping this causes me to plateau off and not progress anymore. I am a little bit confused because I was reading my lab report from my Lumbar stick: Protein CSF, total (HIGH) 85 mg/dL (normal 15-45); IfG, CSF 6.1 mg/dL (normal <6.2); Albumin, CSF (High) 44 mg/dL (normal 14-25). The rest were all in normal range. She said that my test did show protein in my fluid stating that I am demyelinating. But when I read the test page at the bottom it says RESULT: study within normal limits. No evidence of a demyelinating disease process. Why would the report state this at the bottom if my Protein CSD and Albumin CSF were both high and the doctor said my proteins were high too? Should I be worried that she is interpertating my lab results wrong? Well I am sad to have the diagnosis of CIDP I am relieved that I can now hopefully state IVIG infusions and stop the progression. After talking to my neuro she put my mind more at ease and said that this is not a death sentence and that I should not go down the deep, dark path because most people live a pretty normal life with CIDP and have mild symptoms. I have hardly any symptoms right now, mild tingling in hands and feet and a little bit clumbsy with my hands lately. But nothing horrible. She thinks some of the new symptoms I am experiencing might even be caused by the prednisolone and might go away when the pred is done. Now I just have to calm down and try not to obsess about the fact I have this and get on with it.

    • March 28, 2011 at 5:05 pm

      Hi Chirpy bird,
      Hey, I am just a stupid housewife and I said the same thing as her it’s not a death sentence. Our csf was 65. Typically the first # is what they go by. Other numbers are usually checked, for instance we had one white cell which is normal. Each level is indicative for different diseases. Aout the nerve biopsy, not sure what the statistics are, some people have no trouble others have problems that you describe. However, I have not read that the results could be contradictory re a cidp dx. Either the onion bulbing is present or its not. Since your csf came back high, you really don’t have any reason to do it as you decided. Furthermore, when you get the ivig, any benefits you get from it would proove its eficacy and solidify the dx with the response of the ivig. If you can get your mind wrapped around the idea that you have this, there is a medicine and you can go on, you will be all the better. Just be patient and know that it might take some trial and error to figure out what plan works best for you. Also expect some bumps along the way and know that people here will help and listen. I am kind of at a bump now myself, well actually a frealing ditch, but I’ll get myself out somehow! Good luck. BTW, I think you wrote she is going to get you off the steroids in a week, I am not sure that a week is enough time to properly wean off of 40mg a day, she is the doc, but it would not hurt for you to google and research it.

    • March 28, 2011 at 5:27 pm

      My neuro said usually you do see the damage to the nerve on the biopsy but sometimes you get a portion of the nerve that doesn’t show demyelinating leaving you without an answer. I am going to wait and have the newer test – skin biopsy, at the University of MN when I get in to see the CIDP specialist. I am on a waiting list for 6 months out to schedule an appointment. But that is less invasive and you get answers too. As for the pred, I think she is going down to 30 mg daily for two days, then on 20 mg tab daily for two days and then 1/2 10 mg tablet for two days and then it says stop. I hope this is long enough to taper down? Maybe I will lengthen the days for 3 days each instead of two? I just want off the pred as it is miserable!!!

    • Anonymous
      March 28, 2011 at 6:10 pm

      Good call on the sural nerve biopsy. My neuro at Weill Cornell in New York City tells me he rarely orders the biopsy anymore, and only when there is a real question as to whether the person has CIDP. The skin biopsy sounds like a much better bet. Make sure you get on the cancellation list for your neuro at the University of MN. Even if you get on the cancellation list, keep in contact with them. You can’t depend on them to contact you when there is a cancellation, so keep calling at least once a week and talk to the staff about any potential openings in the doctor’s schedule. Get to know the staff a little — ask if there is a particular staffer you should contact about cancellations — be very nice to them, and they will may try to squeeze you in. I even had a staffer take pity on me and talk to the doctor to get me in at an odd time in the morning. Keep your chin up; I’m sure you will feel much better once you’re off the steroids and the IVIG does its thing.

    • Anonymous
      March 28, 2011 at 10:11 pm

      CBirdy ~ The literature says the earlier you are diagnosed and get appropriate treatment the greater your chances of recovery. After several years of being misdiagnosed and going to four Neuros I ended up in the hospital. One evening a nurse came in and asked me if she could look at my chart ~ well, yeah, I said. It took her less than a minute to say “hmm, looks like GBS, I’m going to put a note in your chart… day my doc (a GP) looks at it and says “I think that’s it!” After too long, I finally get to a neuro again and he sends me to another neuro who specializes in peripheral neuropathies and yup its CIDP, and recommends IVIG. Meanwhile back at the ranch my neuro Rx’s me to plasmaphersis(!) which did not work so, totally bummed out I managed for a number of years and finally asked about IVIG ~ OK and WOW – did that ever work for me. I refused corticosteroids/predisone whatever they call it (long story). I think back and wish they had 1) diagnosed me sooner (like one-minute) and 2) got me into IVIG (but didn’t). Consider yourself fortunate for an early diagnosis and (while I won’t do steroids they are certainly a part of a treatment plan that others write about) and ask about IVIG. Not every one responds the same but the statistics lean heavily in the IVIG direction. As you have probably noticed there are lots of opinions about what to take, how much, when and all that. The bottom line for me was to learn as much as possible, read everything, ask questions, take notes, stay as positive as possible, and [U]do not give up[/U]. It’s a journey, it can be lonely, it can be scary, confusing, have its ups and downs, but it sounds like you are getting good care. My best wishes to you.

    • March 29, 2011 at 9:36 am

      Thanks BigTree for the encouraging words. I am letting the diagnosis settle and surprisingly I am not as freaked out as I thought I would be now that I have a plan. I am scared of the IVIG treatment and wondering what the side effects are and what it causes down the way long term – any major problems with being on IVIG for long term? But now I have to wait and see if my insurance company will cover the IVIG infusions. Paperwork has been submitted and I am waiting. I hope they don’t say no because I don’t have the biopsy to go on, only the results of the spinal tap. That would suck if they won’t let me get what my body needs. I have cut down the steroids in half and am already feeling better. I slept last night for the first time in two weeks and the motor feeling in my body is much less. Hopefully it is the pred causing some of these annoying symptoms and not the CIDP. I am trying to stay positive and not get too depressed for now. Hopefully I will respond to the IVIG infusion and be able to move on and have a remission of some sort.

    • Anonymous
      March 29, 2011 at 9:57 am

      Chirpy birdy,

      The insomnia is a result of the prednisone. I was on a short low dose course and as soon as I started tapering off, the sleep came back better. Problem is that the pain is ramping up again. I felt fatigued and a bit weird, like the blood was drained out of my face. There are bad side effects, but you have to weigh those with the benefits of it. Good luck with everything. You are on the right path with the IVIG.


    • March 29, 2011 at 10:18 am

      well, on the positive side, stopping the prednisone is working for you. on the more positive side, if you have your doc document properly your adverse reaction to steroids such as the normal side affects associated with them and as well, most importantly, YOUR INCREASED cidp symptoms and joint pain and the other things you describe you should have ammo for the insurance company to not demand you do steroids as you are a subset that gets worse with steroids. This along with your positive result w/your csf elevation and your clinical presentation should be enough to approve ivig

    • March 29, 2011 at 10:22 am

      never before have you mentioned an improvement as profoundly as you did now. just a stupid mom (yes i know i am having self esteem issues) but…you are now saying that once you stopped or tapered the steroids, the pain came back. so, oif it were gbs, steroids would not help. so if it is not ra (idon’t think steroids help ms, maybe lupsu) it might be reasonalbe to re-explore that it might be cidp not gbs as your signature indicates? Actually, since reading all of your posts, these months, to me, this is the info that stood out most to me regarding finding out what your actual dx is

    • Anonymous
      March 30, 2011 at 11:34 am

      Thanks Dawn. I have not gone to the neuros since last July. (Dr. Driss at NW, works with Dr. Burt on SCT). I do not have muscle weakness and my nerve problems have gotten better except the autonomic issues go up and down. I don’t think that I have CIDP, but you never know. All of the neuros said that all of my tests were normal, including the EMG/NCV’s (3 or 4). My MRI’s were normal so I don’t think I am looking at MS. I am still on the dx of fibro/CFS, possible lupus/RA, some other arthritic condition going on. My mom has very disfigured fingers so that is why I am worried about RA, BUT I test negative for the RA factor. The only slightly elevated tests are the ANA and sed rate and even the sed rate went back down. I am in some bizarre category of vaccine injuries. Very frustrating when all of your tests are normal, but you are fatigued, nauseous and in pain all the time. I am still searching for answers…..I am seriously considering going to Miami.

    • Anonymous
      April 2, 2011 at 6:46 pm

      Hi Chirpy,
      I feel your pain as a young mom, I’m 35, with 2 young girls, 5 and 3. It has been a tough road for me because of the lack of treatment due to being misdiagnosed. I am so happy that you were diagnosed at an early stage. This greatly increases your chances of living a normal life. Yes, it is a very scary thing to hear. Especially when there is so little information on it and so few doctors who specialize it. You will find that one of your greatest resources will be this forum. In here, you will find new treatments that you can bring up to your doctors, you will also find alternative treatments that have worked for others so that you can decide what you are comfortable with and bring things to your doctor that he/she may not be current on.
      I agree with your decision on opting out of the sural nerve biopsy. I had it, it was inconclusive and am now living with permanent foot pain and an uncomfortable feeling that can’t be described. I walked around with this disease for over 8 years before it was diagnosed. The pain, tingling, and numbness kept getting worse so a neurologist went ahead with a NCV and EMG and noticed the severe lack of conductivity between the nerves. I followed up with more NCV’s and EMG’s for the next few years and the demylination was clear as day! I have been receiving IVIG treatments for almost a year and a half and can say that the IVIG has been a Godsend! I didn’t react well to the prednisone at all! I became so mean and moody! And this was before I had kids! I don’t know how my husband stayed married to me! I was just awful, and that was on just 10 mg of prednisone. They wanted me on 100 mg! I said “no way”!
      Although IVIG sounds scary, it really is the only thing that has curved the demylination of the nerves. Since there is still no cure for this disease, the trick is to stay ahead of the demylination. The side effects of the IVIG can be painful, but the loading dose is done in the hospital so that you are monitored around the clock. You can expect to get migraines, back pain, nausea and then some. Planning ahead is key! Ask your doctor to have the orders ready for pain medication (tylenol is a joke for this), you will need something strong, Imitrex for migraines, and something for the nausea. Also, prevention is the best medicine so insist on getting at least 1 full liter of IV Saline and stay fully hydrated. Hydration will lesson the side effects of the IVIG.
      It is tough explaining this to your kids. I had a very hard time. How much information is too much information??? I just realized that the sicker I got, the more honest I had to be, no matter how young they were and are. They saw a mom that went from working full time, studying part time and still being extremely involved in their lives go to a mom that was spending 3 days at a time in bed and when I was awake, I was exhausted, in pain, walking with a cane and in and out of the hospital. It scared them. I didn’t realize how terrified they were every time I would go to the hospital because I would leave for 5 days, come back with bruises from collapsed veins and spend another 2 weeks in bed vomiting and suffering from severe pain and migraines. Just last week I went to the hospital and I took my video camera with me. I filmed part of my stay and treatment and explained it. I just showed it to my 5 year old today and she told me that she is no longer as scared as she was before about the hospital. She was able to see that it was a normal building where mommy is taken care of 24/7. This really put her at ease, which puts me at ease.
      This disease is a such a sneaky little bastard!!! It affects everyone in a different way. Take from this forum what works for you. And when you feel like crying, cry with us. That is what we are here for. I remember when I was first diagnosed, I would post my feelings here and it was brought to my attention, thanks to this forum, that I was going through the classic symptoms of denial. I also mourned myself here. I learned how to say goodbye to the person I was pre illness and accept that this disease is bigger than me, so I stopped fighting my new limitations. There are new limitations that we have all had to get accustomed to. That is one of the most hardest things to do. But this is a great support group. Don’t ever feel like you are whining, feeling sorry for yourself (because you will, and who wouldn’t). None of the emotions that you are going to experience are emotions that we haven’t all gone through. We are here for you. Welcome to the forum family. I wish it was under happier conditions, but it is a good thing to know that there are people just like you, out there, sharing your world and experiences.
      Be well.

    • Anonymous
      April 3, 2011 at 12:57 am

      Just a footnote; I had 44 IVIG infuions back in 2002, & had no side effects whatsoever. No headaches, no nausea, nothing, & it was poured into me in 2 hr. each time. There are many people out there with CIDP who get monthly IVIG & are basically asymtematic, one would never know there is something wrong with them. But they don’t come to the forum, as they are too busy leading their lives. I pray you will be one of those people, God bless…

    • Anonymous
      April 3, 2011 at 11:28 am

      I am one of those very fortunate individuals who are afflicted with CIDP and yet am able to live basically a normal life. I do have pain and numbness in my legs and feet and sometimes in my arms and hands, and my hands certainly aren’t as reliable as they used to be (tremors and clumsiness), and I do suffer intermittent bouts of fatigue, but none of those things stops me. I am certain there are those really lucky ones who have no symptoms — and God bless them. For the rest of us, there is living as best we can in spite of our symptoms (Pam being a wonderful example). I encourage all — no matter the status of their CIDP — to continue to participate in this forum if at all possible. I especially welcome the encouragement and hope I am provided by those participants who are really successfully facing down the challenges of this disease. In my book, that is true heroism.

    • April 4, 2011 at 1:30 pm

      I just got back from getting my spine and neck MRI before I start the IVIG treatments. My insurance company did pre-approve the IVIG treatments through the rest of the year. So I am set up for my first on on Thursday and then the second dose on Friday. I questioned only getting two doses as everything I read says the first dose is given in 3-5 doses. My doctor said that I am getting the same amount of the stuff but in a higher dose over two treatments instead of low dose over 4 treatments. She thinks because I am young and healthy that two doses should be ok for me. Any thoughts on this? I guess I don’t have a choice so I hope I don’t have any horrible side effects from the higer dose vs the lower concentrate. But I am happy to only have to waste two days of my life doing this vs. four. This disease is whittling away at my PTO time from work. Thank goodness I have Friday’s off so I can get some of this stuff done on my day off. I am a little bit nervous because I am getting the second dose on Friday morning at 8 AM and I have to be home by 2 PM to get my 1st grade daughter from school. So I can’t be sick or miserable feeling because I can’t just go home and sleep. Also, my initial dose is not going to be in a hospital but in an infusion center at my doctors office. This should be ok though don’t you think. That is what they do all day long so they should be equiped to handle any situation if it arises. I read that I should drink 8 glasses of water every day starting about 3 days before the IVIG treatment. Does it hurt when it is going into your arm? Do you get fatigued for sure or do some people do just fine? This is so new to me that I just want to understand what is going to happen to me. I hope this stops the progression of the damage. I don’t know how much damage I have but I do have some pain – behind my left knee mostly. It is weird. Sometimes my legs feel completly normal but at night when I try to sleep and I am alone in my head thinking about this disease my legs start to feel weird and my calve muscles and knees start to hurt. I also noticed that over the weekend I did a lot of cleaning and my body felt shakey and weird so I had to stop and sit for a while. I also feel like crying a lot lately and find myself bursting into tears a lot when I get alone. My husband doesn’t understand my disease and kind of rolls his eyes when he sees me crying. I wish I could talk to him about this but I guess he just can’t understand because it isn’t happening to him. I have not said anything to my daughter yet except that mommy is having some problems with my legs and the doctors are trying to make them feel better. I guess I will see how I do with the IVIG and if my symptoms stay mild and I can continue with my life as normal. I did stop the prednisone yesterday. I was at 40 mg a day for about two weeks. I felt horrible so my doctor tapered me down. Yesterday i was down to 5 mg and today I decided to stop. I feel ok so I must have tapered down slowly enough. I don’t feel so buzzy and hyper now that I am off. I hope I never have to go on that stuff again!!!

    • Anonymous
      April 4, 2011 at 6:30 pm

      I have never been on Prednisone for my CIDP, but it sounds like the weird feeling you had this weekend, and perhaps also the emotional issues, could be related to you coming off the steroids. It could also be the stress of dealing with what you are going through, or a combination.

      Having your infusion at an infusion center should be fine. I have never felt any discomfort from the IG going into my arm. At times I have felt a cool sensation along the course of my vein, but that’s all. If you get a good stick, you may be surprised at how painless the actual procedure is.

      You should hydrate as much as possible before, during, and after your infusion. Initially, it helps get your veins nice and fat. It also helps with side effects during and after the infusion. The IG itself is extremely sticky. A lot of people pre-medicate. I take tylenol and benedryl to help with side effects.

      We all react differently to the CIDP and the IG used to treat it. No two people are exactly the same. Once you get a little experience with the infusion process, you will be able to anticipate how you tolerate the treatment and will be better at planning around it. Don’t overextend yourself.

      Please be patient with your husband. He is also stressed by your illness. This disease is hard on the families of those who have it. There is a section here for families and caregivers if he’s inclined to visit.

    • April 4, 2011 at 10:47 pm

      Hi Chirpy birdy,
      Two days is pretty quick to infuse a load. How much do you weigh? For instance, we are on a maint dose, that is one day every two weeks. It amounts to 35 grams of ivig per kilogram of weight for each day, so 70 grams total a month. we weigh 165, a load dose would be 140grams of ivig (2g/kg.) There is a formula that is followed according to your weight regarding how fast it should be infused. It takes us about 4.5 hours for 35 grams. Try to find out how much you are going to get total. to figure out a load dose, you take your weight, diivide it by 2.2 and that is your weight in grams. for a loading dose (4-5 day treatment) you multiply your gram weight by 2 and that is the equivalent of a loading dose, your actual weight in kilograms is a maintenance dose. The center will be able to slow down the infusion rate if you are feeling sick, lightheaded, blood pressure issues, pulse headache, palpitations etc. They will be monitoring you every 1/2 hour as the speed is ramped up, they can slow it down as needed. Just a suggestion, if it were me, I would make alternate plans for someone to pick up your child from school. You can’t be sure how you will feel, if it will be completed on time etc. The pre meds consist of benadryl and tylenol, we used to do them religiously, they did not help. We are not the typical response to ivig regarding reactions, we used to get the aseptic meningitis reaction every time, sick for 4-5 days post, fever, chills migranes throwing up. Others do perfectly fine. That is why it might be a good idea for the alternate plans to pick up your child till you know how you will react. I will pm you my number if you would like to call. Regarding pain, it does not hurt, per my now 14 y/o, started at 9. It only hurt if they blew a vein. Now we have a port so it is no big deal to access regarding blown veins. Probably the best way to get your husband to understand is print him out factual info from the ninds website and then print out some posts here that you think best describe what is going on for you too. something to ask your doc, is inquire if you can do treatments at home, it would be so much easier. I think I already mentioned to you that you can get a fanny pac and move about. A friend of mines daughter even goes to the mall or out to dinner and the nurse goes along, no one is the wiser. We opt for the stay at home and shoot bb guns outside with the nurse option and play texas holdem and xbox. You could opt for the lay on the couch route or get dinner ready. The point is, you can do what ever you want as opposed to being limited to sitting in an infussion chair. regarding your crying, I would say part of it is still prednisone part of it is the unknown and part of it is grief that comes with the disease. You will eventually go through all of the steps, sadness anger, despair acceptance and the ability to stand strong and take it day by day. Honestly it is not a death sentence, just a blip in the radar that you will have to maneuver and will make you stronger in so many other ways.

    • Anonymous
      April 4, 2011 at 10:47 pm

      Hi, I received IVIG into my arm or hand 3 days every month over a 2 year period. No big deal. I did get some very mild flu-like symptoms for the first couple of days – nothing else. Pre-medication was done at the infusion center, Benedryl via IV and Tylenol orally. Check and see how they are doing it before you take anything on your own.

      I also was on up to 80mg Prednisone for a while but couldn’t tolerate it so we stopped. I had weakness in my legs to the point of almost collapsing and terrible electrical shock sensation down my front.

      Good luck.

    • Anonymous
      April 5, 2011 at 7:59 pm

      flu-ish symptoms mite occur? The runs, and loss of appetite? But first before you start? HYDRATE LIKE CRAZY… Get some Gatorade. Drink a[1] 12-16 oz bottle then slurp more water till you slosh! Why? First off, makes your veins easier to ‘access’ or get a IV-line into; Second? Helps you slough off all the dead bad antibodies the IVIG mite create? It does put a stress on your liver which is the filter? So, more water to help ‘filter’ helps things along.
      Silly tho this all sounds? It can help reduce ‘flu-like’ symptoms…but, don’t forget that you are having an immune ‘booster’ essentially and there are other parts of your body that mite well, object? Ususally it’s the ‘runs’, but occasionally it’s loss of appetite or even vomiting. Best advice is to eat very light like a broth and fruit cup the nite before? Likely after your first infusion? You WILL be HUNGRY!!!! I know I’ve been that way after each one..tho sleepy too from the pre-meds.
      Web up the two most common brands ‘Gammagard’ and ‘Gammunex’ and add ‘full prescribing information’ – then read that stuff…don’t let it scare you, just EDUCATE you as to what all this stuff is and what it can do for you? Then..what side effects there mite be.
      The process itself is ‘interesting’ at first? Get’s dull after a while.. Dull? IS a good outcome! Truly. Go and do it!
      Also? Sounds like you’ve got a good schedule. But, to be safe? Do you have a friend to meet your daughter? Just in case? Be safe, careful and good infusing!

    • Anonymous
      April 6, 2011 at 1:03 am

      C Birdy ~ I’ve been on IVIG for 12 years (I think) each 6 weeks and my only side effects are I get very cold and have to bundle up – I have a kit for that. Sometimes a mild headache and I carry acetaminophen for that. I also carry claritin (w/out the D), a and a good book. Benedryl makes me feel goofy-headed. As has been said previously on this site you’ll learn as you go. Hopefully it will be short term.
      Its normal to be apprehensive and not knowing adds to the anxiety. Hydrating is good and I hydrate every day, your body will tell you when its enough. The first week, I couldn’t be too far from a bathroom but my body adjusted. IVIG, CIDP or not, hydrating is good for you any way. Ask your nurses.
      Best wishes………it will interesting to hear the results.

    • April 11, 2011 at 8:56 am

      Today is 3 days after my first ever IVIG infusion. I had 55 grams on Thursday over 4 hours and again 55 grams on Friday only they ran it faster so I only had to sit there for 2 1/2 hours. I felt great on Friday when I left so I made the mistake of not taking it easy. I cleaned my car. At about 2 AM I was woken up with a horrible headache. The headache lasted all day on Saturday and part of Sunday. I guess this was the dreaded headache that everyone talks about. Except for the headache I did not have any other side effect from the IVIG. I did not get flu like symptoms or fatigue. So I guess I am pretty lucky. Next time I think I will put my feet up and take it easy. But I don’t know if that was what caused the headache or if I would have gotten it anyway. Are you suppose to take it easy after IVIG or doesn’t it matter if you feel ok? So it is 3 days after the IVIG treatment. How do you know if it is working or doing something? I really don’t feel that different. I still have mild tingling in my feet at night and sometimes muscle aches in my legs off and on. What should I expect if anything? What does the IVIG do exactly? I was told it was suppose to disarm the antibodies that are attacking my myelin…at least for a little while. Is that right? Will my body repair any damage already done or just stop causing more damage?

    • Anonymous
      April 12, 2011 at 11:22 am

      To a certain extent sure, listen to your body after your infusion and let it dictate your activities. At the same time, don’t make any plans to engage in any strenuous or stressful activity if you can avoid it. I never know exactly how I will feel after an infusion, but I am usually fatigued for a day or two. Every batch of IVIG is different, and each infusion is obviously received under different life circumstances; sometimes I am already fatigued or stressed, sometimes not. Try to take it easy after your infusions and build in time to nap, etc.

      I also generally don’t feel much difference in my CIDP symptoms after an infusion; if anything, I may have a little more stinging and tingling temporarily. For me, the IVIG is working if I am not getting any worse over time; I’m not hard to please. Everyone reacts differently to the treatment. After some time, you can be examined by your physician and undergo testing to determine whether there is any objective improvement.

      My neurologist tells me that no one is really sure exactly how IVIG works. One theory is that the infused antibodies block your own “rogue antibodies” from attaching to receptors on the myelin sheaths and damaging them. Another is that that the infused antibodies dilute the rogue antibodies so that fewer attach to the myelin sheath receptors. Either way the fix is temporary because the infused antibodies eventually die off and need to be replaced.

      My neurologist tells me that the myelin sheaths can heal/regenerate with IVIG treatment, though each individual case is different.

    • April 12, 2011 at 11:33 am

      I noticed a weird thing last night. My right leg looks like it has bruises all over up and down the calve and the knee has one big dark redish-blue bruise that covers the whole knee. They were not there the other day. They don’t hurt and my leg is not swollen or sore. I guess it has to be some type of reaction to the IVIG infusion. But I don’t think it is something to worry about. I also went into the ER the other night after my 2nd infusion. I had this horrible pain behind my left knee that persisted for more than 24 hours and got worse as the day went on. It wasn’t the same type of pain i usually experience with my CIDP. So i called the after hours line for the CIDP clinic and the after hour doctor thought it would be good to check it out and make sure it was not a blood clot in my vein. The ER did an ultrasound and said i don’t have a blood clot but they did find something else. The said I have something called a bakers cyst or also called popliteal cyst. He said that was probably causing the severe deep pain in my knee. He recommended I see an orthopedic doctor if the pain persists. He also said the cyst has probably been there for some time. I wonder if the IVIG infusion aggrigated the cyst causing the sudden pain. I still have the pain in the left leg today and i have to use an ace bandage all the time and heat at night. But I guess i can assume that this pain is not my CIDP but the cyst since it is only in one leg and right behind the knee where the cyst was found. Now another think to deal with…when it rains it pours! But as to how I feel post IVIG. I feel better all around. My hands are not dropping thing as much and my right foot only bothers me when I go to sleep for about 15 minutes. When i lay down finally for the night my feet feel tingly and like a motor is running for about 15 minutes and then they feel completely normal for the rest of the night. I think the IVIG has helpe me feel better and less shakey and weak in the legs.

    • Anonymous
      April 12, 2011 at 11:36 am

      Hi Chirpybirdy,
      I believe I have a similar case of CIDP. I think we are in the lucky category. I have been on ivig for 6 months now and it is really starting to work. You have to come the realization as quickly as possible that you may not ever get back to full operation. It has taken me about a year to get to that point. I have learned to change my life as needed to adapt to my weakness. I am able to work, walk, do most of the things I used to do except I wear out very easily and I sleep a lot. It’s not so bad. Keep reading the posts on this forum and it will help you a lot. Reading these posts have put me at ease. Ask all the questions you can and educate yourself. The biggest thing is not to freak out. You can’t change what is happening. Good luck. Paul