New Member – MMN-CB diagnosis

    • Anonymous
      September 23, 2008 at 5:47 pm

      Hi all.

      I’m new to these forums, though I’ve been lurking for about the past month. Let me start off by thanking all of you for posting here. In the course of investigating my own situation I’ve read a good number of the recent posts here and I’m impressed by how thoughtful, informative and honest they are.

      That said, I’ve got a few questions that I would like to run past the community.

      First a bit of background. I’m 43 years old, male and (other than being pretty amply endowed around the waist) in generally good health. I’ve got no family history of autoimmune diseases, but I do suffer from fairly severe allergies and asthma. Last winter, I began to notice slight numbness and tingling in my toes when I was in a hot shower, tub or jacuzzi. In retrospect, I think the appearance of these symptoms coincided with a bad bout with the flu, but I can’t swear to the sequence. Over a couple of months the numbness became gradually more pronounced until I had it pretty much constantly. At the same time I began to experience muscle pain in my feet and intermittent sensations of extreme heat or cold. At that time I went to a podiatrist who diagnosed bilateral Morton’s neuroma and gave me corticosteroid injections in both feet.

      The steroid injections gave me about three days of relief, and the special slippers the podiatrist recommended seemed to help, so I didn’t question his diagnosis through the remainder of the summer, although the pain and numbness in my feet grew gradually worse (and extended past the two or three toes that are typically involved in Morton’s neuroma). In early August, however, I began to notice in my fingers the same tingling and numbness I’d started with in my toes–again at first when I was in a hot shower or when I gripped the hot steering wheel in my car if it had been parked in the sun. At that point I realized I was dealing with something systemic rather than a nerve compression problem and got a referral to a neurologist.

      Initial MRE and conduction tests showed severe conduction blockages in both legs and significant conduction blockages in both arms. The doc ordered the full range of blood work, DNA tests, MRI, CAT scan, lumbar puncture, etc. All came back negative for the typical suspects (diabetes, Lyme disease, MS, spinal and brain tumors, etc.). The lumbar puncture showed slightly elevated protein levels, but not to the extent that my doctor is accustomed to seeing with CIDP. Accordingly, he’s landing on a diagnosis of Multifocal Motor Neuropathy with Conduction Blocks, which seems as plausible as anything else at this point.

      Anyway, sorry for the long intro, now the questions:

      1) Does anyone have any tips for dealing with neuropathic pain? Mine’s gotten steadily worse and now feels like my toes are being actively frostbitten 24 hours a day. I’ve also started getting bad cramps in the muscles of both my feet and my hands. I’m on 100mg Lyrica twice daily, but don’t seem to be getting much relief. Perversely, putting them flat on a cold floor seems to help a bit. I’m at my wit’s end and ready to try just about anything.

      2) What can I expect from IVIG? My doc has ordered a loading dose of 1gm/kg, infused every other night to begin ASAP (the home health people are sorting out the insurance now, but I expect I’ll start this week). From reading here I gather that one feels pretty crappy after an infusion. Will I be able to work (I’m a lawyer–no heavy lifting, but I need to be able to concentrate), or should I plan on playing hooky? I understand I’ll be getting Gamunex. Is there any reason to prefer one brand to another?

      3) Does anyone have any experience with the Motor Neuropathy diagnosis? From what my doctor tells me, the suspected etiology is the same as for CIDP, as is the course of treatment, though the prognosis for complete recovery is somewhat better. I’d welcome any thoughts.

      4) Have any of you experienced any cognitive impairment–concentration, memory, judgment, etc.–as a result of either CIDP or the medications and treatments prescribed for it? I practice law at a pretty high level and I’m concerned over whether I’m going to be able to continue to do so. I figure I can work around the physical stuff–even very high levels of pain–but even a small impairment of my memory or judgment is going to be fatal to my practice.

      5) I’m in the DFW area. Anyone else in the neighborhood? I’ll be seeking a second opinion at some point. Any recommendations?

      That’s it for now. I hope I haven’t exhausted your patience (though I’m sure I’ll have more as I go along). Thanks in advance for the help.

      Best,

      Barry

    • September 23, 2008 at 7:18 pm

      Hi Barry,
      Nice to meet you. My 11 y/o has cidp, however, as you mentioned treatment is pretty much the same. Regarding your comments about ivig and the dosing. You stated that you will be getting a loading dose of 1g/kg every other day. 1g is not a loading dose, but a maint. dose . A load consists of 2g/kg. I’m sure you know the formula, but just in case. If you weigh 100lbs, you / your weight by 2.2 which equals 45kg. That is your weight in kg. for a load you multiply it by 2 for 2g/kg which would be 90g. So if you weighed#100 you would get 90 for a load and 45g for maint. In addition, typically a load is administered over 4-5 days consecutiveley. The first time is usually done in a hospital to make sure there are no adverse reactions. Eventually, once you establish a schedule that treats your symptoms you could get the treatments at home. Some even wear a fanny pack and do it at work. The first time you should be sure to insist on a very slow flo rate. Kevin is exceptionally slow, but he has a very difficult time with the reactions. In the begining he would get the aseptic meningitis reaction. It has since subsided in intensity but the headaches still are pretty severe. He still complains of the all over flu like pain, but it to is decreasing in severity, or he is just able to tolerate it more. There will be some kinks you need to work out regarding what rate works best for you. Some other advice would be to pre-medicate with tylenol, benadryl and or motrin/aleve. Also try to inquire if the ivig is s/d or liquid. Many have a tougher time with the s/d (powder) formulation. Refering back to the pre meds, it works best for some to continue the process every 4-6 hours around the clock for the duration of the infusion as well, some continue 2-3 days post. My son included. About your pain, lyrica is a drug used specifically for nerve pain. Your dosage seems kind of low. Others on the site use neurotnin as well, as high as 3600mg daily. Unfortunateley, these medications may affect your ability to function at the capacity necessary to maintain your practice. Actually, the lyrica could be one of the factors for your current dilema of cognitive concearns. The issue of cognitive impairment itself has been discussed many times on the site. My son was affected as well, especially in math and the ability for critical thinking regarding problem solving. There is no documented abstract that I can find that links cidp to cognitive ability, but I know what I see. Perhaps it manifests itself as a result of the overall stress the disease causes therefore indirectly linking it? What do I know. Kevin is not on any pain meds so I know there is no correlation between meds and cognitive impairment. Now that we are 23 months into this and it is under control and he is symptom free w/ivig, I have noticed his stress level is better as well as his ability for critical thinking. Fluke? who knows. The best thing to get from this site is info, use it, digest it, ignore it, whatever works for you. Everyone is so different and what works for one may not work for another. Also, be your best defense attorney for yourself when you go to the doc. Be strong and firm in what you want and expect, otherwise you will get eaten alive. Both literally and figuratively. Best wishes and stay strong.
      Dawn Kevies mom

    • September 23, 2008 at 7:25 pm

      I forgot to adress your questions about going to work. If you are infused after work at home (after first hospital stay) It may be realistic to go to work the next day. It just depends on your reaction. Kevin gets sick 2 days post, some during, some the last day. You will have to feel that out. I could see the benadryl being an issue regarding cognitive abilities. Maybe you could get lucky and find an infusion company that would do it over the weekend. Some nurse work perdium, if you could arrange for your insurance company to purchase the drug direct, perhaps you could arrange paying a perdium nurse over the weekend? Neber tried, don’t even know if iot is possible. I suspect you eventually would move to maint. doses, therefore cutting the infusion time in half. it may be a rocky start, but the road gets smoother, I assure you. It is just a part of our life now with the occasional bump in the road.
      Dawn Kevies mom

    • Anonymous
      September 23, 2008 at 7:32 pm

      Thanks, Dawn. I’ll review the dosage on the ivig. I was stating it from memory, so I may have gotten it wrong. I do know that the first dose will be administered in three parts given every other day. I’m told it will take about 4 hours per part. How long do your son’s flu symptoms last? If I get ivig in the p.m. can I expect to be feeling okay in the a.m.?

      I spoke with my doc today about the nerve pain. He’s prescribed something new–my wife has the script, so I’ll have to update later with the name and dosage. Whatever it is, I sure hope it works. I generally have a pretty high pain threshold, but this nerve pain stuff is a whole ‘nother animal.

      I also went out today and bought a stylish new cane. Very slick, with built-in flashlight and annoying alarm noise. Too bad you can’t get one with a cell phone and blackberry included. If you could, lawyers would be carrying them for the sheer convenience.

    • Anonymous
      September 23, 2008 at 7:34 pm

      First dose is definitely scheduled to be at home. Doc says this is now standard. Should I be concerned?

    • September 23, 2008 at 8:54 pm

      Typically it is done in the hosp. the first time. But nothing seems to be typical as of late. Some have had their first dosing in an outpatient facility. Personally, my feeling as a mom, not a professional, just an opinion, Kevin was miserable in the hospital for five days. When he did have symptoms it took a few minutes to get the nurse (not her fault, a particularly busy night in the peds icu). All that needed to be done was to cease the treatment for an hour and the resume at a slower rate. I imagine if your doc takes a slow rate from the get go you would be ok. BE SURE THAT YOU ASK IF THE NURSE WILL STAY THE WHOLE TIME, AS WELL, BE SURE TO DEMAND AN ANAPHALACTIC KIT BE SENT. This would consist of a a saline drip with a benadryl push and a vial of epinephrin. I am goping to check our kit to be sure and get back to you. So do not quote me on it yet. Honestly with your nurse sitting beside you monitoring your vitals and kit in hand, the likelihood of a quicker reaction is better at home. Besides, we are about 2 minutes from the firehouse and I suspect care would arrive quicker. Understand these are rare instances and not likeley, but indeed possible.
      About the dosing, Kevin’s loading dose laste 6 hours and 40 minutes each day over 4 CONSECUTIVE days. I don’t remember reading of any one else who had it every other day. But anything is possible. I do not know your weight or if it is 1g, but 4 hours over 3 days seems like it may be a quick infusion if in fact it is 2g. You may be fine. Kevie does not always get the flu symptoms, just sometimes and they do appear to be tolerable. As time went by the symptoms have lessened. We now time the treatments for his post reactions so that they happen on the weekend and he is good to go on Monday. a typical episode now, may be 36-48 hours post with a duration of 6-8 hours of symptoms ranging from severe migrane accompanied by vommiting, fever, chills, no movement and darkened surroundings to just a six out of ten pain migrane. The time in between the 36-48 hours he is running around and playing like a mad man. Please remember you may have no symptoms and be ready to go right after completion. Many are ok. I do not want to discourage you, but by the same token I would not want to tell you the possibilities. The bright side is we have a medicine, it works, it helps and eventually you have a chance for a pretty normal life once you stabalize and determine your treatment schedule. Good luck.
      Dawn

    • Anonymous
      September 23, 2008 at 8:56 pm

      Hi, Barry. Welcome to the forum and this on-line family of sorts. Sorry that you have needed to join us, but we are glad to help now that you have. I will try to give my two cents on your questions.
      First, pain. Neuropathic pain is tough to deal with. You potentially can increase the Lyrica (slowly so as not to make you too sleepy). Others say they get better effects with the old tried and true neurontin (gabapentin) but many say that it has more side effects especially sedation. Cymbalta helps some of us. Since you respond favorably to coolness, use this when you can.
      Regarding IV IgG. Dawn is always right on about advice with this. Most people get a loading dose of 2 g/kg and then various neurologist try much less or somewhat less as loading. The important point is to get enough into you to see a prolonged effect. Sometimes this does not happen after the first dose or two. It seems important to be dosed relatively frequently–at least every 4 weeks although some people need redosing every two to three weeks to keep the level of immunoglobulin high in the body. I work with children with immune deficiencies and we often give immunoglobulin pretty rapidly for replacement or due to autoimmune blood problems. However, this group of people cannot take it fast. I think this is because the immunoglobulin is binding and substituting for other bad immunoglobulin on nerves and this interplay annoys the nerves. At least that it what it felt like to me. The maximum rate I could take infusion was 150 ml/hr. We have 4 -5 year olds going faster than that–but if I went faster, I felt like an horse was trying to sit on me. I got my infusions of immunoglobulin at my work I got to pretend to be a child–ha!) and worked most of the time through them. I did get headaches–the aseptic meningitis and this bothered working as did taking benadryl to help prevent this reaction–but if I fell asleep, people just laughed at me and life went on. If you get infusion at night and are going to sleep anyway, take benadryl. Otherwise, take tylenol and/or Aleve to prevent headaches. Only about 10% of people are supposed to get the significant headaches with immunoglobulin–again the frequency on this site seems a lot more. I have seen a number of significant transfusion reaction to immunoglobulin and personally, I do not think that it is really safe to do at least the first infusion at home. One in 700 people are IgA deficient. One in 20,000 people anaphylax to immunoglobulin meaning they have a life-threatening allergic reaction to the immunoglobulin and typically it is because of IgA cross-“contamination” or co-purification in the product. There is thus a non-trivial chance of having a really bad reaction and even dying and the chances of this happening are greatest on the first or second infusion. For some people, those numbers are not too bad, but for me, I would not chance it. Many of our kids get IgA levels checked before the first infusion so that one knows a little bit if the risk is greater or less. Personally, I think it is worth going to an infusion area for the first times–take a bunch of your paperwork and a cell phone and work away.

      Classically, cognitive impairment is not supposed to be part of this set of illnesses as it is supposed to be damaging only the peripheral nervous system. That being said, many of us have trouble with thinking at times. This MIGHT be due to the fact that there is direct effect on the brain as some research argues that the effect is really not isolated to the peripheral nervous system. It also may be due to the fact that pain is tiring and having your life suddenly and irreversibly altered is tiring and stressful and saddening. It could alternatively or also be due to the medication used to try to help us live life. I also have continued to work in a pretty intense position–not like you, but one with its share of challenges. I have had to modify what I do and find ways to minimize physical effort. My guess is that you will also. However, your go-to attitude will take you far.

      WithHope for a cure of these diseases
      GBS 3/07–maybe CIDP, maybe not……

    • Anonymous
      September 23, 2008 at 9:34 pm

      typically the anaphylaxis kit also has steroids –either hydrocortisone or solumedrol (methylprednisolone) to give IV if there is an significant allergic reaction. Epinephrine can be given as a shot or they could send an “epi-pen” but usually IV benadryl and an IV steroid are sent for serious, but not “stopped breathing” reactions. The reasons to use steroids and/or benadryl include hives, shortness of breath, swelling of the face/eyes/lips or drop in blood pressure. I do not mean to sound scarey, but working at a place that gives lots of immunoglobulin has made me take it seriously that significant reactions can occur and that they can be severe enough that you may not be able to get help if you are alone and not prepared. Please do not do the infusion at home without the resources for emergent treatment if a reaction were to occur. You are an adult and a lawyer at that so can understand that people take risks for reason of convenience, but at least be prepared if you choose to do this at home the first times. Stay safe.
      WithHope for a cure of these diseases

      Hey, I have another question. Are you superman lost in Gotham City????

    • Anonymous
      September 23, 2008 at 11:40 pm

      Hi Barry & welcome!

      My daughter is 7 & has CIDP. I’ve read up on CIDP but I don’t know much about MMN. I’ll try my best to answer your questions.

      1) Does anyone have any tips for dealing with neuropathic pain?

      I don’t have experience with the meds. I always gave Emily Motrin for her pain & it helped. Stretching seemed to always help her.

      2) What can I expect from IVIG?

      Well, each person reacts differently to IVIG. You won’t know how & if it will even affect you until after your infusion. It’s always given Emily more energy.

      As far as getting it every other day – I’ve never heard of it for a man. I know that it is sometimes recommended for every other day for women. Not sure why though. It’s just info that I’ve read along the way.

      3) Does anyone have any experience with the Motor Neuropathy diagnosis?

      I don’t have any info on it but wanted to offer some advice – when researching MMN make sure you read everything you can. Don’t just take 1 websites word to be true. I’ve learned that the hard way. There’s a lot of wrong info out there. My rule is that I have to read something from 3 different sources before I will believe it to be true.

      4) Have any of you experienced any cognitive impairment–concentration, memory, judgment, etc.–as a result of either CIDP or the medications and treatments prescribed for it?

      Some people report a kind of brain fog. I’m not sure if it’s from the meds or the illness. I know when Emily was in a relapse she would stutter when speaking. She would also forget what she was saying often. The only med she was on at the time was IVIG.

      5) I’m in the DFW area. Anyone else in the neighborhood? I’ll be seeking a second opinion at some point. Any recommendations?

      You can call the Foundation & ask them for dr recommendations.

      Good luck,
      Kelly

    • Anonymous
      September 23, 2008 at 11:48 pm

      Thanks, Dawn and Hope, for the info. While I know everyone is different, it’s still nice to have an idea of the universe of likely experiences. I’m especially concerned about allergic reactions, as I seem to have more than my share of such things in my everyday life (which is probably connected to me having this condition in the first place). Of course, I suspect the mechanism with ivig reactions is at least somewhat different, but hives are still no fun and dying of anaphalaxic shock certainly isn’t.

      My understanding is that my infusions will be done at my home by a home health nurse who will stay the entire time. I’ll inquire as to availability of an epi pen and other procedures in case of severe reaction, but we’re within about 5 minutes of a world-class emergency room, so I figure I’m probably as safe as I’m likely to be anywhere. I’ll get infusions three days a week (MWF?) for a month, then I’ll drop to three days, every other week, and then eventually to three days, once a month. I’m extremely curious to see what sort of shape my veins will be in when all this infusing is done. Not great, I’m guessing.

      The new med is gabapentin–600 mg three times a day. We’ll see if I tolerate it better than the Lyrica. Hopefully so, because dragging myself through a 300-page contract today (second day back since I went on Lyrica two weeks ago) was sheer hell (i.e., even worse than it is without any drugs!) I’ve inquired of my doc as to whether he thinks this is going to interfere with my work and he seems pretty adamant that it won’t. I’m not sure he appreciates that my job is every bit as demanding as his (and probably more so), but for the moment I’ll take his word for it and try to soldier on. Still, I’m a bit worried, if it turns out in the long run that I just can’t keep doing the corporate law gig that I’m gonna run into a fight over whether I’m “disabled.” Oh well. I’ll cross that bridge when I come to it (which, hopefully, will be never).

      As for “lostingotham”: I started using that name online when I was living in Manhattan. The original legend of Gotham was of a town where everyone pretended to be crazy in order to discourage unwanted visits from the king and his unruly court. For a kid who grew up in the big city of Canyon, Texas (pop. 12875) , New York seemed like such a place. My wife and I left the City when we started our family, but I liked the name so I kept it. Sorry to disappoint on the Superman thing, but I did pick up a groovy cane on Amazon which has so many nifty functions that I call it the “Bat Cane.” (I’d attach a link, but I can’t figure out how to do it here). Poor substitute for Superman, I realize, but it’s something. ๐Ÿ˜‰

    • Anonymous
      September 24, 2008 at 12:59 am

      Hi Barry,
      With regards to your question number 4 – I have CIDP (not multifocal motor neuropathy) but have found that the fatigue associated with my CIDP can impact on my concentration. So, the more fatigued I am – the less able I am to concentrate on the task at hand. I am half way through a law degree and as you know there’s lots of reading to be done and I now have to study in short bursts – otherwise I can’t focus. I can’t blame medication for the fatigue.
      Some days are worse than others – it all depends on how I am feeling and also on what I have been doing – for example: If I have been overdoing things physically then I am more fatigued which then impacts on my concentration – which I suppose makes sense.
      I have just bought a groovy new walking stick as well ๐Ÿ™‚ Mine holds down to fit into my handbag – so I am not forever dropping it (like I do with my old one) when I am sitting down in a cafe, train etc.
      Also, the first symptoms of CIDP I can remember having were two numb toes.
      I wish you all the best,
      Kazza

    • September 24, 2008 at 10:06 am

      Hi Barry,
      My critical thinking is a bit off this morning. I would have to sit down and calculate those dosages. It sounds like from what you write you are going to get ivig every other day all month, is that what you mean? Eventually your doc will taper you to three days once a month? It would seem by quickly thinking about it it would be a load or more? I will have to think about it and pm With hope as well, she will know.
      Regarding the veins, they may become an issue. If you resume work daily, you would either have to re-access every day or go to work with the line taped up. Short term the veins should be ok. but I do not know what the threshold would be?! If you and your doc decide this is long term, probably will be, Kevin is going on 24 months, you could explore the possibility of a port. It consists of a catheter in the neck that leads to a device (port) in the subclavial area or tright below your clavicle and chest area. The access is guaranteed and no issues with the vein going bad as it leads to a main vein. You could have the needle removed daily if you like, Kevin just keeps it in and taped up for purposes of being sterile. Lots to think about. For now I would just focus on a regular access and probably plan on starting on a Monday and reserving Thurs and Fri as hooky days to see where you are reaction wise. I think talking it easy afterwards may aid in reduction of symptoms, but try convincing an 11 y/o that after he has been cooped up all week.
      About the pain med, I think you said gaberp., that is the generic for neurot. I have no experience w/ the drug aside from what I read here and my father in laws experience. He was taking 3000 mg and it did make him sleepy. Especially early on. As he became used to it he did regain somewhat normal abilities cognitiveley speaking. Maybe you could take the first week of treatment to be your breaking into period if you will. Good luck.
      Dawn Kevies mom

    • September 24, 2008 at 12:43 pm

      Barry,
      How much ivig are you going to get per day? It seems like it is more than a loading dose. You are lucky your doc is aggressive. He is trying to flood your body with antibodies (ivig0 to smother out the autoantibodies. Kevin gets loading doses and has for 8 months straight until the recent taper. i am convinced that is why we have had such great progress. We are both lucky to have aggressive docs. I spoke w/Kelly, Emily’s mom, she mentioned that Emily originally was on that protocol. Personally I have never read that abstract, but I can tell you from how Kelly described Emily from start to present, it is pretty miraculous.
      Dawn Kevies mom

    • Anonymous
      September 24, 2008 at 1:27 pm

      Hi Barry:

      One of the hallmarks of multifocal motor neuropathy is the total lack of sensory symptoms or sensory loss. MMN does not not present with tingling, numbness, etc – It is purely motor weakness, and painless. It is also typically quite asymetric (one hand much weaker than the other, etc.) It sounds as if you have considerable sensory issues, and those were your first symptoms. There is a variant of CIDP called Lewis-Sumner Syndrome, or it is sometimes called MADSAN (multifocal acquired demyelinating sensory and motor neuropathy.) This variant is asymetric (multifocal), presents with sensory and motor impairment and conduction block, and will often present with only mildly elevated CSF protein.

      Lewis-Sumner is my diagnosis, and my onset sounds similar to yours (insidious sensory symptoms starting in feet) The condition can develop into severe disability, as it has for me.

      You may consider seeing a neuromuscular or peripheral nerve specialist at a teaching university to really confirm your diagnosis, as MMN has divergent treatment options from MADSAN.

      Best regards,

      Bill

    • Anonymous
      September 24, 2008 at 3:17 pm

      Bill,

      Thanks for the comments. I’ll be seeing my doc again early next week and will raise the inconsistency of my sensory issues with the MMN diagnosis. I’m also working on choosing a neurologist for a second opinion consult, so that will be an issue for discussion there, too.

      For what it’s worth, the gabapentin is working much better than the Lyrica. Took my first dose last night before bed. Woke up a couple of hours later and it was a couple of minutes before I realized what I was missing–the pain in my feet. I honestly hadn’t realized how bad it had gotten until it was gone!

      Now I’m almost pain free unless something touches my feet, and then it’s just a minor burn/freeze sensation. Before it was as though I was constantly being boiled alive.

      Whew!

    • September 24, 2008 at 5:45 pm

      Great news about the pain!
      Dawn

    • Anonymous
      September 26, 2008 at 1:18 pm

      Barry,

      I was diagnosed with CIDP in March 2008. I am seeing Dr. Alan Martin with Texas Neurology (214 827-3610). It is located at 6301 Gaston Ave.

      Dr. Martin was recommended by the first Neurologist I saw. I had been sent to the first Neurologist by my GP. I have been impressed with Dr. Martin and would recommend for your second opinion.

      I am having IVIG treatments and am making progress, although painfully slow. My treatments are at the Texas Neurology Infusion Center on Gaston Ave.

      I am impressed that your doctor is being so agressive with your dosage. After the initial load dosage I was given only the maintenance dosage for the next two months. I stabilized but did not get better. Since they have now doubled my dosage, I am improving. I wish they had done that in the very beginning.

      I have not had any negative reactions to the IVIG. I take no other medications.

      Donnam

    • Anonymous
      September 28, 2008 at 7:55 am

      Llostingotham.
      Do not expect miracles on gabapentin. It takes time to work, several weeks.
      At the beginig I had vertigo and more mental fog than ever, but later this symptos started to fade.
      By now is the better drug I found for pain. I know is working because I tried to quit it once, and the pain was terrible in my arms and legs.
      About cognitive impairment, is has not been reseached for CIDP as for MS. I bought a book about it at amazon.com “Multiple Sclerosis Understanding Cognitive Challenges”, it has some strategies to deal with the “mental problems we have” and depression.
      I also go to a psychoterapist.

    • Anonymous
      October 3, 2008 at 7:33 pm

      the presentation of your symptoms were/are quite similar to mine. after trying other things, i have settled pretty comfortably with cymbalta 60 mg and vicodin conservatively. my experience is that if you take just enough vicodin for your pain level, you will not feel a significant cognitive difference…

      hope this helps.

      neurontin did nothing for me except made me really tired and kind of dumb, slow.

      alice

    • Anonymous
      October 4, 2008 at 4:30 pm

      Hi Barry! So sorry you have had to go through all this and hope the treatment plan works for you. I think you have had your questions answered but just wanted to welcome you to the site. I hope you get to feeling better soon! Pleasure meeting you!
      LindaH

    • Anonymous
      October 22, 2008 at 2:59 pm

      Hi, folks. Thanks for the many helpful responses and apologies for not posting in so long. Between infusions and catching up on two weeks of missed work, I’ve been pretty busy.

      I began ivig infusions on Monday, Sept. 29. My doctor set a course of three doses 650 mg/kg each given a day apart. I felt generally crappy on Tuesday after the first infusion (as if I were hung over). Second part of the dose was on Wednesday. On Thursday I was nauseated and achey to the point I didn’t get out of bed. Third part of the dose was Friday and I was seriously dreading it. To my pleasant surprise, Friday’s dose seemed to carry no ill effects for the next day. I also had no allergic reaction to any of the infusions–though they do seem to make me very, very sleepy after about an hour or so of infusing.

      I’m also happy to report that my symptoms improved dramatically almost right away. By the following Tuesday, I had discarded my cane. By Thursday, the 10th–10 days after the first infusion, I could walk as well as I ever could, stand on my tip toes, and feel all but the two outside toes on my right foot (downside, I discovered that my athlete’s foot has not been idle while I wasn’t paying attention! ๐Ÿ™ ) The symptoms in my hands and arms were completely gone, as was almost all of my neuropathic pain (only a bit of burning at bedtime in my feet). By Sunday, I could barely detect any symptoms at all.

      Based on my excellent response, my doc decided to drop my follow up course (which would have been identical to the first course) to a single 650 mg/kg infusion two weeks after the first course, followed by an examination to determine how to proceed. I had that infusion on Monday, Oct. 13th–two weeks after I began the first infusions. Unfortunately, that dose does not seem to have been sufficient to keep my symptoms in check. Since about the 12th I’ve noticed the slow return of symptoms in my feet–both are now burning and tingling all the time, and I’m having trouble moving my right foot. My appointment with my neuro is day after tomorrow, at which time I expect he’ll want to up the frequency of my infusions and/or try a second “loading” dose.

      As for gabapentin–I have really had good results using it, far better than Lyrica. My doc says that many of his patients do better with gabapentin, although Lyrica is touted as being more potent and effective. His opinion is that Lyrica’s hype is mostly marketing noise.

      My doc also says that since I presented he’s seen two other patients with similar symptoms. Given the rarity of CIDP, that qualifies as an epidemic. He says he’s reaching out to other local neuros to try to determine whether he’s the only one seeing this spike, and he’s concerned as to whether there’s an environmental factor that might be causing it. Should I learn anything further, I’ll post right away.

    • Anonymous
      October 22, 2008 at 4:15 pm

      Hi there, and I have only just read through your posts. But excellent news that you responded so well to the IVIG. I did the same thing for about 2 hours after my first dose. I walked to my neighbors house, the driveway, anywhere I could! But…it didn’t last. You may need IVIG on a regular basis and the key will be figuring out at what frequency. I started at 4 days once a month, then 2 days in a row every other week and now get one day a week. There are folks here who get it every couple of months,weeks etc. so be persistent in getting a treatment plan that allows you to stay without a relapse. And if you learn anything further about a high percentage of cases, let us know. Good luck! Gabrielle

    • Anonymous
      October 22, 2008 at 11:45 pm

      Barry,

      I am in the DFW area.

      September 7, 2007 I had a colonoscopy. The next week I had extreme muscle fatigue. I could not figure out why. Then the loss of muscle strength started and progressed. After seeing a GP and two neurologist and many tests, I was diagnosed with CIDP March 24, 2008. Of course there is no proof, but there is no doubt in my mind that something happened during the colonoscopy that caused my inflammation. It has been suggested that maybe their equipment had not been cleaned appropriately.

      I wonder how many people with CIDP have had a minor seemingly innocuous medical procedure that could have resulted in inflammation.

      donnam

    • Anonymous
      October 23, 2008 at 9:57 am

      Interesting idea, donnam. For what it’s worth, my neuro is Dr. Zaid Blaik at Presby. May want to suggest that your doc talk to him. If you do the math, you’d expect something like three new CIDP cases per year in DFW, total. Sounds like we’re over our quota.

      No medical procedures for me of late. I tie my onset to a bad case of the flu (and perhaps to my very first use of tamiflu) last winter.

    • Anonymous
      October 27, 2008 at 8:50 am

      Hi Barry,

      Glad to hear your treatments are helping!!. I have no experience with IVIG treatments yet, but, I have been diagnosed with similar EMG findings.

      I have the nerve blockages in both legs and arms as you do. nerve conduction below the blockages are great. 43 as well. My diagnosis is
      Multifocal CIDP and is certain. I just had my 4th EMG last Friday and the
      blockages are still indicating in the same area but moved in location a few inches. Don’t get that but:

      Anyway, Dr. Brown told me the two any only diagnosis possibilities for me are MMN or Multifocal CIDP. He told me the only difference between the two is that Pain is associated with the CIDP varient and not normally found with MMN. Either way, your treatment are helping so that is what counts. I wonder the difference in your case as to what made it MMN?? It sound like you have some noteworthy Pain. Also the Gabapentin works real good for me. I didn’t care for the Lyrica either.

      Good Luck Barry!

    • Anonymous
      October 27, 2008 at 2:33 pm

      I’ve been working through the medical literature on CIDP and MMN. From what I gather, there’s an important difference between MMN and Lewis Sumner Syndrome (LSS) in that LSS often responds to corticosteroids while MMN does not (and can even be made significantly worse by steroid treatment). [I]See [/I]Versheuren, et al., “Lewis-Sumner Syndrome and Multifocal Motor Neuropathy”, [I]Muscle Nerve [/I]31:88-94, 2005.

      My doc is proposing a regime of steroids to supplement my IVIG, which I assume means he’s abandoned the MMN diagnosis and is now settling on LSS. I’ve got an appointment today, so I suppose I’ll get some answers then. In any case, given what I’m reading, I’m going to need a second, and maybe a third, opinion confirming his diagnosis before I agree to such a course.

      Meanwhile, I’ve been reading all the cheery case studies on thrombotic events (e.g. strokes and heart attacks) associated with high-dose IVIG. Sigh. Depressing stuff. ๐Ÿ™

    • Anonymous
      October 27, 2008 at 3:56 pm

      Hello Barry:

      As per my earlier post in this thread, I am diagnosed with Lewis Sumner variant, (also called MADSAN or Multifocal CIDP) My diagnosis has been reaffirmed by two university specialists and Mayo Clinic. I have been receiving IVIG since 2004, with modest success in that it slows progression. I have also been treated via plasma exchange and Cellcept. In addition, in 2005 I was placed on a high-dose regimen of IV Solumedrol. (corticosteroid)

      Solumedrol, it was concluded, was a very significant factor towards hastening and worsening a severe exacerbation that lasted over six months, and left me with major disability still today.

      I definitely do not have MMN as I have sensory loss and pain, in addition to asymmetric motor weakness and conduction block – they say I have a pretty textbook presentation of aggressive Lewis Sumner Syndrome.

      So, I guess my point is that there is so little really known about these diseases – in my case, steroids indeed caused a severe flare-up of disease activity, and doctors really can’t say why.

      The treatment I am most interested in for myself is the ultra high-dose cyclophosphamide immunoablation regimen, as my case has been pretty refractory to more subtle immunosuppressive treatments.

      Also, don’t be so concerned about IVIG side-effects, its considered a pretty benign treatment, relative to risk, etc.

    • Anonymous
      October 30, 2008 at 4:07 pm

      I did have a flare directly after taking one of those steroid packs. There is something to be said there about the Prednisone could make things worse if take independantly. This is my fear. for I have multifocal CIDP and first starting steroids as a trial directly after the Symposium.

      If it wakes up the monster, I hope they are prepared to take quick action on me.

    • Anonymous
      October 30, 2008 at 10:29 pm

      Tim
      We’ll keep you in our prayers..Can;t wait to see you and wifey at the symposium..Thanks again for everything.

    • Anonymous
      November 6, 2008 at 6:19 pm

      Thanks, Bill. All worth keeping in mind. Have decided with doc to forego steroids for the moment, as I’m having decent response from IVIG (though I have never gotten back to the high point of function I experienced about a week after my first loading dose).

    • Anonymous
      November 6, 2008 at 8:27 pm

      [QUOTE=donnam]Barry,

      I am in the DFW area.

      September 7, 2007 I had a colonoscopy. The next week I had extreme muscle fatigue. I could not figure out why. Then the loss of muscle strength started and progressed. After seeing a GP and two neurologist and many tests, I was diagnosed with CIDP March 24, 2008. Of course there is no proof, but there is no doubt in my mind that something happened during the colonoscopy that caused my inflammation. It has been suggested that maybe their equipment had not been cleaned appropriately.

      I wonder how many people with CIDP have had a minor seemingly innocuous medical procedure that could have resulted in inflammation.

      donnam[/QUOTE]
      Hi Donnam,
      My husband wonders the same thing. He had an intravenous pyelogram and stents placed for kidney stones. He wound up with a big infection in his arm and was on IV antibiotics for 10 days. He seemed to develop his CIDP symptoms after that episode.
      Laurel

    • Anonymous
      November 6, 2008 at 8:36 pm

      [QUOTE=Billt]Hello Barry:

      As per my earlier post in this thread, I am diagnosed with Lewis Sumner variant, (also called MADSAN or Multifocal CIDP) My diagnosis has been reaffirmed by two university specialists and Mayo Clinic. I have been receiving IVIG since 2004, with modest success in that it slows progression. I have also been treated via plasma exchange and Cellcept. In addition, in 2005 I was placed on a high-dose regimen of IV Solumedrol. (corticosteroid)

      Solumedrol, it was concluded, was a very significant factor towards hastening and worsening a severe exacerbation that lasted over six months, and left me with major disability still today.

      I definitely do not have MMN as I have sensory loss and pain, in addition to asymmetric motor weakness and conduction block – they say I have a pretty textbook presentation of aggressive Lewis Sumner Syndrome.

      So, I guess my point is that there is so little really known about these diseases – in my case, steroids indeed caused a severe flare-up of disease activity, and doctors really can’t say why.

      The treatment I am most interested in for myself is the ultra high-dose cyclophosphamide immunoablation regimen, as my case has been pretty refractory to more subtle immunosuppressive treatments.

      Also, don’t be so concerned about IVIG side-effects, its considered a pretty benign treatment, relative to risk, etc.[/QUOTE]
      Just wondering if you had immediate exacerbation of your symptoms with Solumedrol? My husband has CIDP MADSAM. His only treatment thus far has been IVIG (other than one two week period on Immuran in which he got sepsis). He has no pain symptoms at all. Just profound atrophy and weakness of right arm and some foot drop of right foot.
      Laurel

    • Anonymous
      November 7, 2008 at 4:27 pm

      Laurel:

      Here’s a little history on my case. Prior to starting IV Solumedrol, I was receiving IVIG for about 18 months. It was moderately effective. I was taken off IVIG because doctors believed that it may have been causing a persistent very low white blood cell count. While doctors tried to figure out a next step, I was off any kind of treatment for about 6 weeks. During the last two weeks of this timeframe I was experiencing a gradual buildup of increased symptoms – but nothing dramatic.

      Then, on a Wednesday I had my first infusion of Solumedrol. The dose was one gram. On Thursday there was no changes in symptoms. Then, I woke up Friday morning and felt like a train wreck. I went from being able to drive an automobile on Thursday night, to not being able to drive because of such increased leg weakness and sensory loss on Friday morning. Over the course of the next three weeks or so, I basically lost all function of my hands and left arm, along with extreme weakness in the legs and severe double vision and facial numbness. My doctor continued me on the pulsed steroid regimen for a few more weeks, then weaned down the dose to get me off it.

      I was put on a plasma exchange schedule for three months, then, Mayo Clinic recommended that I go back onto IVIG despite the low WBC. After about 8 total months of this exacerbation, I recovered enough to begin driving again with hand controls and prism lenses for double vision. I have been stable on IVIG – no major gains – no major new losses, albeit still pretty disabled – for 18 months now after this episode. So, yes, the IV Solumedrol caused an acute, severe effect within 48 hours.

      Best of luck to your husband.

    • Anonymous
      November 7, 2008 at 11:15 pm

      [QUOTE=Billt]Laurel:

      Here’s a little history on my case. Prior to starting IV Solumedrol, I was receiving IVIG for about 18 months. It was moderately effective. I was taken off IVIG because doctors believed that it may have been causing a persistent very low white blood cell count. While doctors tried to figure out a next step, I was off any kind of treatment for about 6 weeks. During the last two weeks of this timeframe I was experiencing a gradual buildup of increased symptoms – but nothing dramatic.

      Then, on a Wednesday I had my first infusion of Solumedrol. The dose was one gram. On Thursday there was no changes in symptoms. Then, I woke up Friday morning and felt like a train wreck. I went from being able to drive an automobile on Thursday night, to not being able to drive because of such increased leg weakness and sensory loss on Friday morning. Over the course of the next three weeks or so, I basically lost all function of my hands and left arm, along with extreme weakness in the legs and severe double vision and facial numbness. My doctor continued me on the pulsed steroid regimen for a few more weeks, then weaned down the dose to get me off it.

      I was put on a plasma exchange schedule for three months, then, Mayo Clinic recommended that I go back onto IVIG despite the low WBC. After about 8 total months of this exacerbation, I recovered enough to begin driving again with hand controls and prism lenses for double vision. I have been stable on IVIG – no major gains – no major new losses, albeit still pretty disabled – for 18 months now after this episode. So, yes, the IV Solumedrol caused an acute, severe effect within 48 hours.

      Best of luck to your husband.[/QUOTE]
      Dear Bill,
      Thanks for writing the above. I am printing and saving it for future reference. My husband has won his battles over staying on IVIG thus far. It seems that his neuro. has okayed another year’s worth of IVIG. We were to go before an IVIG committee to have to plead his case, but his neuro. recently decided to let things be as he continues to do well with just the IVIG. Options discussed have been steroids and Cellcept since he failed on Immuran. Your experience is valuable information for us. I am so sorry that you had that terrible experience.
      Laurel

    • Anonymous
      November 14, 2008 at 7:37 am

      Barry,
      Yesterday I had my infusion at the Texas Neurology Infusion Center. In the room I was in there were 12 people. Six of the 12 had CIDP. I talked with the people on each side of me. One has had it for six years, the other for two. I know one person on the other side of the room has had it for four years. I did not hear the other two mention how long they have had it. I did not get to talk with them, I had just heard them say they have CIDP. I think I was the only one of the six that was diagnosed this year.

      I do not know if the statistics that have been quoted are for diagnosis in a given year or total individuals per 100,000. Anyway I thought this a large number for our area, considering you mentioned your dr is treating three new patients this year.

    • Anonymous
      November 17, 2008 at 3:07 pm

      Certainly seems that way to me, donnam. Numbers I’ve seen for occurence of CIDP are between 3 and 10 cases per 100,000 people (that’s over the course of a lifetime). Most cases occur in adults, so figure 1 case per 500,000 people per year at the outside. In the Dallas area (approx. 6 million) that works out to something like 12 cases per year. How likely is it that three of those cases would end up in the office of the same neurologist in a month?

      Either the statistics for frequency of CIDP are way off, or we’re having an epidemic here in Dallas. Given possible links between CIDP and various environmental factors, viral infections and/or food pathogens, my bet would be on the latter. Seems to me that the CDC ought to be paying attention.

    • Anonymous
      November 17, 2008 at 11:03 pm

      I just wonder how many are walking around not even diagnosed yet! Could be much more! Hugs
      Linda H