CIDP How you really know?

    • Anonymous
      August 2, 2006 at 5:56 pm

      My neurologist thinks I have CIDP. He has run a variety of tests, EMG, anti-MAG, Lyme and I’m getting a brain MRI tomorrow to rule out MS. He does not think I have MS or Lyme although my county apparently has an epidemic of Lyme and I’ve had two dogs with Lyme disease despite precautions. He says he wants to do IVIG treatments as soon as possible but I am scared spitless to try it and I’m not really convinced I have CIDP. How do you really know if you have it? I have the same symptoms as many people I’ve read but I’ve also got other things going on like scar tissue compressing my nerves that do not seem to be related. Should I try the IVIG and risk the side effects to help with the diagnosis? I’m feeling scared and frustrated that we can’t seem to pinpoint what is really going on with a definate diagnosis. How can he still say it’s CIDP when nothing shows up abnormal except the EMG nerve conduction tests? They say my peripheral nerves show demyelenation but does that have to mean CIDP? I’m hoping someone out there has had a similar experience in trying to diagnose CIDP and can provide some information on their experiences.

    • Anonymous
      August 2, 2006 at 6:29 pm

      Hi Julie
      Was wondering if your doc included a lumbar puncture in his studies? I’ve read that elevated proteins in the spinal fluid and nerve blockages (as opposed to delayed conduction) lead to the dx.

    • Anonymous
      August 2, 2006 at 6:51 pm

      No, he hasn’t mentioned a lumbar puncture. He just wants to go straight to IVIG. He came up with that diagnosis within 45 minutes of meeting me and hasn’t really wavered from it in the past few months but he never mentioned a lumbar puncture. He said the pattern of my problems indicated the diagnosis – I had scar tissue compressing a nerve in my foot, had surgery for that, got sick with a virus and started having spreading neurological problems for the past 8 months – mostly on my right side but pretty much all of my right side is affected, including my face, eye and ear.

    • Anonymous
      August 2, 2006 at 7:13 pm

      I’m really new to this myself so I can’t offer you much information. My doc was skeptical as to why I was even there, until the nerve conduction studies came back with “0”s. I think at that point he had decided it was CIDP, but confirmed it with the lumbar puncture and negative brain mri. And, he proceded to order genetic tests to check for inherited neuropathy like CMT as a co-condition.

      I think that if you have serious doubts you should seek a second opinion. IVIG is quite scary.

    • Anonymous
      August 2, 2006 at 8:23 pm

      Julie- CIDP and GBS are inflammatory neuropathies. CIDP must have high protein in the LP to confirm the diagnosis. The best website is (Link deleted by administration)
      THe Neuropathy Association- you can order a booklet which describes all the neuropathies in detail. Also, look at (Link deleted by administration)
      great resource on CIDP. Good luck! supesij

    • Anonymous
      August 2, 2006 at 10:45 pm

      When I was diagnosed with CIDP, I also had an EMG, a lumbar spinal tap and a brain MRI to rule out anything else. The latter test indicated I had MGUS from the elevated protein. I would want to ask the doctor about the spinal tap.

      Best wishes for your treatment.

    • Anonymous
      August 2, 2006 at 10:46 pm

      The spinal tap not the brain MRI indicated the MGUS.


    • Anonymous
      August 3, 2006 at 3:37 am

      Hi, Julie.

      In my case, my neuro ran all the tests and gave a preliminary diagnosis of CIDP (she was fairly certain it was CIDP after my first EMG showed demyelination), so she gave me IVIg. And when the IVIg helped, she finalized her diagnosis–in other words, IVIg proved to be a part of the testing.

      If you have to have IVIg, don’t worry. Most of us have only minor side effects–certainly not as many as with other treatments. And even if you’re afraid of needles you’ll find that you quickly adapt, particularly when you see improvement of symptoms.

      BTW, there have been cases in which protein levels in spinal fluid of CIDP patients have been normal. That’s the problem with CIDP: it’s very individual.

      Best wishes in the battle,


    • Anonymous
      August 3, 2006 at 4:49 am

      Julie, I agree wih Deb and your neurologist. Your Doc. ran some tests to exclude some other diseases, but essentially the diagnosis of CIDP is made from the pattern of the disease, that is your symptom story plus his clinical findings. Electrical studies confrm demyelination and often show a pattern typical of CIDP; spinal fluid protein levels are often raised, but not always.
      IVIG is a fairly benign treatment and often in medicine we use treatment to confirm the disease process. Follow the advice of your neurologist. Best wishes. DocDavid (CIDP for 6 years)

    • Anonymous
      August 3, 2006 at 5:37 am

      Thank you everyone for responding. I feel like there is finally someone out there I can talk to about all this stuff. I’m not scared of needles at all but I do tend to have weird reactions to drugs that don’t bother other people. I feel pretty depressed about this invisable illness too, some people have even asked me if I’m drunk and that makes me want to cry. Thank you again for your support folks … one day at a time – today is not such a good day but at least I’m walking. 🙂

    • Anonymous
      August 3, 2006 at 10:11 am

      Just wanted to drop in and say listen to DocDavid….his advise on these forums is second to none….and I was asked many times prior to my dx, “Have you been drinking”, so I can relate to your “drunk” issue. IVIG was not scarry for me nor did I have any problems with any of my 4 infussions to date. Hang in there and drop in and ask any questions you may have….there are lots of great and knowledgeable folks here.

      God Bless

      GBS dx July 2005
      CIDP dx July 2006

    • Anonymous
      August 3, 2006 at 11:14 am

      I’m not really sure that I agree with the statement that IVIG is benign. From what I’ve gathered, doctors don’t know specifically how it works, which begs the question: how is affecting other systems in the body? We all know of the immediate risks (blood clots, stroke, asceptic meningitis, kidney failure, viruses), and that it can damage veins. It does seem to be working for me, so I will continue with my treatments, in spite of the risks. But I would not enter into IVIG treatments lightly, bypassing normal lan tests like spinal fluids and brain/spine mri’s.

    • Anonymous
      August 3, 2006 at 5:40 pm

      I had my brain MRI this morning and fell asleep though it only took about 15 minutes. Nice nap! I asked my sister who is a nurse about the lumbar puncture and she suggested that it might not be a good idea to subject myself to that. I’ve had multiple slipped disks throughout my back and while it’s been MRI’d to death my back is not causing my current problems. Go figure. I’m plagued with slipped disks for 20 years and my current neurological problems are not related – my back is more or less fine. Well thank god for small favors, adding my back into the list of places that spasm would really send me over the edge. Anyway, she has also been doing some research and she said that some people do not show proteins in their lumbar puncture so the test may be inconclusive and it may cause issues for my back. So I’ve decided I will give the IVIG a try and hope for the best or at least some stability which I’m in dire need of right now. I’m starting a new thread about work which has become unstable for the first time ever in my career.

    • Anonymous
      August 3, 2006 at 6:12 pm

      CSF protein levels can be higher than normal for diabetics…It takes a pretty high level to get a doc to DX as CIDP from what I have seen…


    • Anonymous
      August 3, 2006 at 6:46 pm

      Julie, I have had a severe case of CIDP for 2 years now…Woke up with weakness in legs and 24 hours later totally paralyzed from mouth to toes for 8 months. Still nable to walk, speech is back about 75%, swallow muscles returned after 8 months, thus feeding tube now removed…and I can go on and on. Get second opinion and get necessary treatment, but always keep your spirits high and fight whatever monster you are dealing with. Every morning as my husband rolls me into the shower via my showerchair, I committ to fighting this monster with every fiber of my being…
      Good Luck & Take Care!!

    • Anonymous
      August 5, 2006 at 3:57 am

      Oh my, you’ve really had a tough time of it! I admire your spirit, it’s really hard not to get depressed sometimes. My whole lifestyle has changed dramatically in the last 8 months but when I read about people so much worse than me I feel like a whiner. I expect I will get used to having a disability but I’m not sure if I can get used to the guilt of not feeling like I’m pulling my share of the load. I feel like I’m running my husband ragged because I can’t keep up with household chores, can’t do the grocery shopping, and so on. He has been wonderfully supportive but I want him to have a life too, although I’m sure he’d be thrilled to bathe me every day if I couldn’t anymore. 😉

      Thank you for sharing, it helps to know that there are other people out there worse off than me who are dealing with it better. I’ll get the hang of it eventually. 🙂

    • Anonymous
      August 11, 2006 at 10:52 am


      I have CIDP with severe fatigue and the typical numbness and tingling. Due to the fatigue, I am unable to work, which really bothered me until my GP told me to let my ego go and admit I was disabled. He said this last May, and since then things have been much better for me.

      I count myself as a very fortunate person to only have severe fatigue and not have some of the severe symptoms others have. I try to look at every day as a gift, knowing full well that tomorrow may never come and if it does, it may not be as good as today.

      My symptoms are slowly getting worse and none of the treatment so far have seemed to help. Who knows what the future will bring?

      Sorry for being long winded, because the purpose of this post was to tell you about book that I read yesterday called, “You Don’t Look Sick” by Joy Selak and Dr. Steven S. Overman. I wish that I had found this book 2 years ago. It described exactly the stages of this struggle since it started in September of 04. I cannot recomend it highly enough. It gives real insight into the struggle with chronic illnesses.

      I found this at our local Neurological Resource Center, but if you click on this link:

      (Link deleted by administration)

      you will find it at

      I really would recommend that you read it. It was an eyeopener for me.

      Good luck and take care of yourself,


    • Anonymous
      August 11, 2006 at 11:45 pm


      Another defining test is a sural nerve biopsy. In my case, that was the final piece of the puzzle. A nerve biopsy would show demyelination ans well as remyelination. It could show degeneration at the neuromuscular junctions. It could show axonal damage as well. All of these things could be indicative of CIDP.

      If you respond to IVIG, that would also be indicative of CIDP. CIDP also responds well to prednisone, that would be another clue.

      Unfortunately, there is no one single test that says yes or no to CIDP. It takes an experienced neurologist with this type of experience.

      I wish you well
      Dick S

    • Anonymous
      August 12, 2006 at 11:20 am

      [QUOTE=Dick S]Julie,

      If you respond to IVIG, that would also be indicative of CIDP. CIDP also responds well to prednisone, that would be another clue.[/QUOTE]

      … unless you have variant like I do. My diagnosis is CIDP with antiMAG IgM. Unfortunately, it is [B][u]not[/u][/B] very responsive to IVIG or prednisone.

    • Anonymous
      August 12, 2006 at 8:25 pm

      Julie keep your spirits up! My husband also has wierd reactions to medications that no one else has. It just makes him even more special than I knew he was !! Sigrid

    • Anonymous
      August 23, 2006 at 6:55 pm

      Thank you all for the well wishes, I gave an update on my issues on another post addressed to me but I wanted to tell Sigrid that I grew up in the Smoky Mountains in Tennessee!

      And to say that so far I’ve had no reactions to my current medications – Mestinon and Cellcept. Whew! Thank goodness for small favors in a big crisis!

    • Anonymous
      November 3, 2006 at 2:01 pm

      You dont look sick is definitely a great book! Another one that I have found is called Sick and Tired of Feeling Sick and Tired(excellent book). Additionally, here are some others that are superb for people with Invisible Chronic Illnesses.

      We are not alone: Learning to Live with Chronic Illness (excellent)
      A delicate balance, living successfully with chronic illness

      I initiially got all these at the libraty and when I saw how great they were, I purchased them on Amazon. Got some used ones at good prices and even bought the You dont look sick, and sick and tired of feeling sick and tired for a friend of mine with Lyme disease. She agreed that it was so helpful for her