questions from recently diagnosed CIDP

    • Anonymous
      February 20, 2013 at 5:02 pm

      I was recently diagnosed with CIDP.  I am not sure when it actually stated.  I noticed numbness in my fingertips during the summer of 2012 and began to experience noticeable weakness and some balance problems around Sept/Oct 2012.  I hadn’t felt great for probably at least a year before this all started.  I had been under a lot of stress, had gained some weight, and felt tired, but thought I was just out of shape and getting a little older (I’m 54).  Now as I look back, I wonder if cidp can be that gradual and if mild symptoms were starting much before I actually started having more apparent symptoms.  I remember even in the summer of 2012 that my walking didn’t feel quite right.  I wasn’t alarmed until things got progressively worse during the fall of 2012.  After I finally got the appointment with the neurologist and went through tests (ncv/emg, mri, lumbar puncture), it was December 2012 before the cidp diagnosis was made.  By the middle of December, I was struggling with many daily activities.  Being able to stand from a chair was almost impossible as was going up stairs.  I was unsteady on my feet and using a cane.  Dressing was difficult because of the weakness in my hands.  This was my lowest point.  At this time, I took a leave from work and I also had extra help from my family, and had less stress in my life and within a few days noticed a remarkable change and increased strength and mobility. Could stress have this profound an influence on cidp symptoms?  I already had my first (and only to this point) ivig scheduled for a couple of days after I started improving and the doctor recommended that I go ahead with it even though I was showing improvement.  A second ivig was scheduled for two weeks later, but I was doing so well (and had had a reaction during the first ivig and they had to stop it about halfway through), the doctor suggested that we not do the second ivig.  I wasn’t back to normal, but was doing much better.  My condition stayed pretty constant over about the next month, until toward the end of January 2013.  I did not ever get back to normal, but was much improved.  However, over the past few weeks until present, I am having more weakness again and my fingers are pretty numb most of the time.  I am back at work (since mid-Jan.), but reduced hours, and even with that I seem to tire very easily.  The insurance company denied coverage of the ivig (we are appealing, since that was what my neurologist suggested as the best treatment for me, -BCBS wanted me to have tried and failed at prednisone as well as have a nerve biopsy, and there may be a prior approval issue as the provider did not obtain prior authorization).  So, since I am having weakness again, and we cannot afford $6,000+ out of pocket for another ivig,  the doctor has suggested prednisone.  He seemed concerned about possible side effects, though.  I’m trying to decide between the following treatment options:
      1)  Start prednisone now.
      2)  Wait a little longer to see if the ivig might be approved by insurance.  (Right now, my symptoms are bothersome, but not unbearable.  I have some difficulty walking/feeling steady (using a cane some), and going up steps is hard, and I have weakness/numbness in my fingers/hands, but I’m still able to work and function okay, not great, but I manage; it’s just things are much harder/slower.)  Am I taking a chance on more damage if I wait to treat this?  I’m trying to weigh out which is worse – having weakness in my hands/legs or having high blood pressure, weight gain, brittle bones, mood changes, etc.  
      3)  It seems that I improved a great deal previously when I took a leave from work and reduced stress.  I wonder if I should go that route and see if my condition improves as it did before.  Has anyone heard of cidp symptoms getting better as quickly as mine did?  Within a week I went from the worst I’d been (almost to the point of not being able to function without help), to close to where I’d been as all this was just starting – not back to normal, but significant improvement.  

      I’m not sure how early my cidp was caught (if it started late summer/early fall of 2012 or if it was gradually coming on long before that) and if I’ll ever get back to normal.   A few years ago I was biking up to 15 miles a day, walking, exercising, being pretty active and I’m afraid those days are gone.  Do many people ever gain back that much function? How do you determine what constitutes a remission and a relapse, or active cidp vs recovery?

      Even though I have read online for information and discussed things with my neurologist, and I understand we are all different and cidp is unpredictable, it still has helped to read through the experiences of real people on this forum who are dealing with cidp.  So, please if any of you have any thoughts, suggestions, or positives stories to share, I’d appreciate hearing from you as you have time to comment. I am trying to understand cidp and remain hopeful about what’s ahead.

    • GH
      February 20, 2013 at 6:22 pm

      There is a great deal of variation from one case of CIDP to another. The rate of progression can be very slow or relatively rapid (a few weeks). Response to treatments also varies. It often takes some experimentation to find the treatment protocol that works best for you.

      IvIg is a standard treatment for CIDP, so should be considered a medical necessity if your neurologist wants to do it. Unfortunately, some insurance companies try to weasel out of their obligations at every opportunity. I was fortunate to have very little difficulty with insurance coverage. I had two five-day rounds of IvIg which were covered, even though they were not of much help. If you need IvIg, but have trouble with side effects, you can try reducing the infusion rate, or changing brands if possible. Also, there are medications you can take when having IvIg which make it more tolerable.

      Prednisone is generally used as a short term treatment, starting at a full dose, then tapering down to zero over the course of a year. I followed this regimen with no adverse side effects. While taking prednisone, I started taking mycophenolate mofetil, an immune system suppressant. This takes awhile to have an effect, but by the time the prednisone is dropped, it is sufficient by itself.

      You definitely should try to remain optimistic. My case looked pretty bleak. I continued to deteriorate after IvIg. I spent about two weeks in the ICU and was a quadraplegic for a few weeks. I was a paraplegic for a few months. I knew recovery was beginning when I could lift one finger independently of the others.

      It was a long road back, but today I walk without any assistive devices, I do not require pain meds or IvIg infusions, and the only medications I take are mycophenolate mofetil and two optional nonprescription supplements. I am not fully recovered — I can’t run, I’m still a little unsteady on my feet, and my feet hurt most of the time. I’ll take it. I hope your recovery is as good as mine or better.

      It is important to watch for signs of relapse. It is important to distinguish from general exhaustion and relapse. Exhaustion is typical of CIDP, and will come from overexerting yourself. You must have physical exercize, but must pace yourself to avoid exhaustion and to rest as needed. Relapse is not merely tiredness, but progressive weakness specific to affected nerves and muscles. You need objective ways of monitoring this. Your neurologist does this when he tests your strength in various ways. You can do this at home very easily with small weights and elastic therapy bands. If you have a persistent loss of strength, evidenced by inability to lift a given weight in a particular way, then it could be a sign of relapse, which calls for an examination by your neurologist.

      I know that I am in remission because my ability to lift weights has not declined, my balance has improved, and my pain has lessened, even though the improvement has been very slow. But I take nothing for granted. At the start of every day, I try out my legs and think about whether they seem as good as the day before. I do a few exercizes now and then, and test my balance. Then I just go on with my usual activities. I am very fortunate in that there has been no backsliding so far.

      It seems that you are still trying to arrive at the best treatment plan for you, which will lead to the best recovery. I wish you the best and urge you not to give up hope.

    • GH
      February 20, 2013 at 6:44 pm

      I recall that there was a period when I felt chronic fatigue before I began having noticeable symptoms of weakness in the legs. I am sure now that this was from the early stages of the disease. I don’t remember how long this went on, but it doesn’t matter as the timing would vary from one person to another.

      By the way, the nerve biopsy is generally used to support the diagnosis when there is uncertainty about it. As you have had all the usual tests except this one, and your symptoms are consistent with CIDP, I expect your neurologist is confident of the diagnosis. Your insurance company has no business asking for another test, especially an invasive one, if your neurologist doesn’t need it, in my layman’s opinion. Every medical procedure has an associated risk.

    • Anonymous
      February 21, 2013 at 2:31 pm

      Thank you for taking time to respond.  At times I’m okay and feel hopeful; other times I cry and just want things to go back to normal.  It is good to hear that there are people out there doing well.  Thank you for the information and the positive insights.

    • February 21, 2013 at 11:37 pm

      jane—you shouldn’t  have to have a nerve biopsy just for your insurance company to cover your treatment, but if your Dr suggests it’s a good idea or for some reason you do need one, just wanted to let you know I did have it done at the Mayo in MN.  They used my sural nerve as my feet are the weakest.  It really was not that bad, I had it done under local anesthesia, was able to walk on it immediately after.  There was some nerve pain in the area after for a while, but not bad.

      I know everyone’s experience with it is different. I opted to go through with it because I was already in MN, figured  Mayo would be one of the best places to do it.  I actually had less problems with the nerve biopsy than i had with the lumbar puncture.

      I do have an atypical case where it was suggested to help with diagnosis.

      sorry i can’t help you much with your questions on relapse,recovery etc. Im a little over three years in with this diagnosis. Have tried prednisone, ivig, plasma x/c, rituxin and now am currently back on ivig.   The ivig seems to slow down the progression, but nothing has helped me gain back strength or sensory loss  so far.   it is discouraging and can take time to find treatment that works.

      I just recently started with a new neurologist I found online listed as a cidp center of excellence (st elizabeths in Boston).  I also got accepted to Chicago for the 3 day consult to see if i am a candidate for a stem cell transplant.   Wish i had applied for this sooner, i kept hoping the other treatments were going to work……oh well hindsight.

      It is a hard disease to deal with and normal to wish for your old life back—-I go through this a lot too.  Seems like most of us that have this were avid exercisers and led very active busy lives prior.    Best of luck in getting the ivig approved by your ins co.  im still in the appeal process for the one set of  rituxin infusions i received back in June for $17,000 that they did not deny until after i received the infusion.   insurance companies are just so joyous to deal with!!!

    • Anonymous
      February 22, 2013 at 12:01 am

      My neurologist didn’t think a nerve biopsy was necessary, so I’m hoping I don’t have to do it.  My ankles are actually probably my strongest area, so not sure if that would affect the results.  I’ve heard a couple of people mention having atypical cidp and I’m curious about what some of the variations are.  The only thing I remember being said early on about my case is that it was a bit unusual that I wasn’t equally weak in all areas.  Even though I thought I was having a lot of trouble with my legs as things progressed at the end of the year, I was told my arms were actually weaker.  I had a month where things were not back to normal, but much better.  As I get worse again now, I still think my symptoms are not as bad as some people have.  I am having difficulty with weakness, numbness, etc., but I’m still functioning, at least right now.  While I’m waiting to hear from my doctor about starting prednisone, I just wonder if anyone has had any degree of relief from something like a prescription strength anti-inflammatory drug like ibuprophen.  I’d like to take the least harmful medicine that might help.  I guess I’m just searching…  Thanks so much for sharing your experiences.

    • GH
      February 22, 2013 at 12:26 am

      As I wrote, I transitioned from prednisone to mycophenolate mofetil (CellCept). MM is a long-term replacement for prednisone, whicj I took for only a year. My neurologist does not like to use prednisone for a long term, because of the side effects. MM is an immunosuppresant drug.

      A “typical” pattern is for muscle weakness to be bilaterally symmetric, and to begin in the legs and progress upwards. Any diversion from this could be called “atypical.” Rate of progression also figures in. GBS reaches its maximum extent in eight weeks or less. CIDP tends to be much slower, typically developing over several months, and following either a relapsing course, alternating between weakening and recovery, or a long, weakening progression. My case is atypical in that I reached maximum weakness in eight to ten weeks (I was originally diagnosed with GBS), then have recovered steadily for about two years without relapse. There is a great deal of variation, and treatment must be individualized.

    • February 22, 2013 at 6:21 am


      I believe it is possible to have a very mild CIDP for years before a major episode of symptoms. For at least 8 years before my major episode, I had trouble getting up from a crouched position. I thought at the time that it was just age, fat, and deconditioning. It may have been partly that, but I now think it was a low-level CIDP. My major episode was not as bad as many that you will read about here, but without treatment, it would have been much worse.

      As to treatment, as I said in another post, IVIg is the standard treatment, so your insurance company should cover it. However, any treatment that works is better than none at all. If you are in fact stable, you might be able to wait a bit. Make sure you are not getting worse, though. Keep a diary of symptoms and review it every few days. If you find things are worse this week than last and have not resolved the problem with insurance coverage for IVIg, I would recommend starting prednisone. Yes, the side effects can be severe. However, by not arresting the inflammation and demyelination, you leave your nerves more susceptible to damage to the axons.

      As for stress, people react to it very differently. Many people here have seen a correlation, sometime a very strong one, with stress and severity of symptoms. My major episode was unrelated to stress. Once I was treated, I had very rapid improvement, returning to acceptable, if not full, function within days.

      I was not physically active before my major episode, so I don’t have the benchmark you have. I was left with some weakness, such that it is awkward for me to get down to the floor or up from it. I have some minor pains and other deficits. But that is OK, because I can do nearly everything I want to do. I am content to be where I am now.

      Godspeed in finding your treatment soon,

    • Anonymous
      February 22, 2013 at 6:43 pm

      Again, thank you all for taking time to so carefully explain and share what you know about cidp.  This is a wonderful resource.

    • GH
      March 17, 2013 at 4:04 am

      By the way, here is a link to a recent newsletter of the Foundation which contains an article on recommended exercises for rehabilitation from CIDP:

    • March 20, 2013 at 1:50 pm

      Just diagnoised this Feb, landed in Seattle Swedish Cherry Hill.  Medically stabilized (5 days) and then transferred to the Swedish Intensive Rehab.  Made amazing progressive thru Feb early March and was scheduled to go home 3/18, but had a major relapse starting 3/14 and continuing to today.  It really has gotten to me. The Docs here seem to think it was caused by reducing my predasone dosage and maybe the start of a preventive antibiotic Dapsone.  The upped dosage of predasone back to 40 mg orally per day and stopped the dapsone and are considering adding Imuran.  I have went from independent to dependent and after a month plus I believe I am out of benefits and just don’t know what to do or anything –  a very scarey time for me.  Please advise (1st posting here)

    • GH
      March 20, 2013 at 2:01 pm

      JohnQ, this should probably be a new thread.

    • March 20, 2013 at 3:21 pm

      sorry to hear what you have been going through… Im not sure if the fact that your ankles are strong that would affect your nerve biopsy – I would think it would though.. Did your EMG/NCV show demylenation/typical CIDP??    I hear the results of the nerve biopsy can be patchy- I would think if your ankles aren’t weak it would increase the chances of the biopsy being normal dispite you having a disease process going on.. but who knows!?!   They did an epidermal nerve biopsy on me (it is a less invasive skin biopsy).. I guess it’s a new way of doing it. .. that’s what helped them with my diagnosis.. it was very minimally invasive – they jsut take a punch biopsy of three areas (ankle, calf and thigh).. mine came back significantly abnormal.. I think it was then that my neurologist said – huh, something weird is in fact going on- im not just totally crazy! 🙂

      I get IVIG.. I tried only three days of prednisone, they started me out at 60mg, which was just too much for me – other people on here might be good to ask if they started out at lower doses and worked up, or higher doses and tapererd down.. The 60mg was too much during an exacerbation and I felt it worsened me.. I wish I would have tried lower and worked up. Otherwise, I hear great things about it working great, especially along with an immunosuppressant like cellcept or immuran . Good luck!

    • Anonymous
      March 21, 2013 at 12:53 am

      I just wrote a post, but it lost it, so here’s the abbreviated version…  With all the tests, it seems that the diagnosis was clearly CIDP and the neurologist didn’t see a need for the nerve biopsy.  I started 60mg daily prednisone 3 weeks ago, but continue to get worse, while still trying to get ins. approval for IVIG.  I’ve had to take another medical leave from work.  Walking is difficult, my balance is off, my hands and arms are weak.  It feels almost like I’m walking around in a heavy, lead suit which makes all my movements slow and difficult, requiring too much effort and energy.

    • March 21, 2013 at 1:33 am

      ahhhh.. same thing happened to me!! wrote a long post and it got deleted …. I am SOOOO sorry you are going through all of this.. I remember just waiting for IVIG.. I was waiting for ANY treatment, and it seemed like the dr’s didnt’ care, ore didn’t realize just how fast i was declining.. I felt like I was going to wither away – i coudln’t take care of my kids, work, hardly eat, you name it … it was devastating..


      I also had that heavy concrete in my shoes and hands.. it was so awful.. I”m glad they aren’t making you get the nerve biopsy, but am shocked especially if your test clearly show CIDP why insurance isnt’ approving it yet?  Did the prednisone seem to make things way worse? Have they talked about other immunosuppression/cellcelpt etc?    So sorry you are going through this.. I really feel for you.. I’ve been there

    • GH
      March 21, 2013 at 1:45 am

      Immunosuppresants generally take weeks to months to reach maximum effect. If you are declining rapidly, you need the five-day treatment of IvIg promptly. If you continue to decline, you may need more IvIg or even plasma exchange. I had two five-day regimens of IvIg, continued to decline, then had plasma exchange. By the time I received PE, I was already mostly paralyzed below the shoulders. If you are getting weaker at a noticeable rate daily, you need more aggressive treatment as soon as it can be arranged.

    • Anonymous
      March 21, 2013 at 4:16 pm

      Thanks for the kind words.  Hard to type this a.m., so will be brief.  Ins co. claims to go by american academy of neurology diagnostic criteria which they say requires a nerve biopsy, so they may force the issue even though dr doesn’t think it is necessary. Prednisone has not helped, but don’t know if it has hurt either. I am definitely going downhill with this.  Walking and movements very difficult this morning.  Neuro wants me to see me in a few days, so hoping for some help then.

    • GH
      March 21, 2013 at 5:49 pm

      You may have to do the biopsy then, but the insurance company is just hoping for a loophole, in my opinion. The AAN does seem to have a “mandatory” criterion of a nerve bopsy, but this appears to be for research purposes. It is not usual for neurologists to require this when all other indicators are present. I am unable to find a link to the AAN document, because it is available by subscription only. However, here is a link to an interesting report on the usefulness of the nerve biopsy:

      Good luck to you. I hope you get the treatment you need soon.

    • Anonymous
      March 21, 2013 at 7:38 pm

      I am slowly declining daily, but try to keep it in perspective as I know there are people who cannot walk or use their arms at all.  Mornings are worst, but by late afternoon I have slight improvement.  Overall, however, I continue to lose ground and have difficulty with many basic activities of daily life.  I have started trying to lift a 1 lb. weight with my arms as a measure of how I’m doing.  Sometimes I can lift it using certain muscles to a certain degree; other times not.  For example, with the weight in my hand, I could not curl it with my bicep.  I could, however, lift it with my palm inward and could push it up to about my head, then with a lot of effort I could push it just a little farther.  This is a far cry from my days of walking, biking, weights, and athletic activity.

      GH, are you saying that prednisone may not have reached its effectiveness yet?  I’ve been taking it for 3 weeks and thought I got a little boost the first couple of days, but since then it’s been a pretty steady decline.

      I’ve been looking through my test results and notes and the best I can understand it, everything clearly points to CIDP as the diagnosis.  Two neurologists agreed on the findings after the initial EMG/NCV, then followed with the lumbar puncture which showed elevated protein.  (And of course, MRI, other labwork and clinical observations.)

      I found this article from NIH that came out in Nov. 2012.  From this and other things, it appears to me that nerve biopsies are only indicated when there are problems making the diagnosis from other tests.

      I hope I can find the right treatment and get back some of the function I’ve lost in strength, range of motion, and mobility.

    • GH
      March 21, 2013 at 7:58 pm

      From the Foundation newsletter:
      “Established Therapy of CIDP”

      “Corticosteroids have been the mainstay of treatment for CIDP. Retrospective analyses document improvement in 65 to 95% of CIDP patients. To achieve this benefit, high-dose Prednisone has to be prescribed for a minimum of six months (initial dose 1 mg/kg. body weight/day for 6 to 8 weeks, subsequent tapering by 10 mg/month and change to alternate-day dosing). First signs of improvement were seen at mean 1.9 months and maximum benefit was reached only after a mean 6.6 months.”

      This is treatment for a slowly progressing course, not a rapid one. If you are getting weaker daily and cannot curl a one-lb weight, I am surprised you are not already in a hospital preparing to receive IvIg. When I was hospitalized, I had no use of my legs, but could still push my wheelchair around. Eventually, I lost even that.

      But here’s an encouraging note: two years out of the hospital, I walk without a cane or any other assistive devices. You need to get proper treatment soon to maximize your potential for recovery.

    • Anonymous
      March 21, 2013 at 8:23 pm

      I appreciate hearing the positive experiences and results others have had; it does provide hope for better days ahead.  I’m hopeful with my appointment in a few days and possibly some movement toward working on the insurance problem that these things will get me started in a better direction.  I feel at my best in the afternoons, which I’ve suspected could be due to the amount of prednisone in my system, but I don’t know.  Nevertheless, I can curl the 1 lb. weight this afternoon (for 3-4 reps), but could not during the morning hours – same thing yesterday.  I’m also using a cane to help with balance.  I can still move, but the effort and energy doesn’t match up with these simple activities.  I guess I’m still trying to evaluate everything, looking for patterns, etc. as I try to figure this thing out.  Thanks again for taking time to respond and offer information and encouragement.