How Were You Diagnosed With CIDP???

    • Anonymous
      May 12, 2011 at 3:35 pm

      I was diagnosed with CIDP in 2008. Since then, I’ve changed neurologists a couple of times…but they both agreed that I did have CIDP and also an inherited neuropathy. Until just recently they thought that the inherited neuropathy was CMT (Charcot Marie Toothe), but my old neuro decided that wasn’t it.
      Now I’m seeing a new neuro, and he wants to run all these tests on me to make sure that I have CIDP. He’s the first doctor that I’ve been to that isn’t positive that I have it. I had a muscle and nerve biopsy done back in 2008, and that’s when I was first diagnosed with the CIDP. But my new doctor is saying that the biopsy isn’t conclusive. He hasn’t actually looked at the biopsy findings yet though. He’s also wanting to do genetic testing to see what type of inherited neuropathy I have.
      I just wanted to know how were any of you conclusively diagnosed with CIDP?:confused:

    • Anonymous
      May 12, 2011 at 9:45 pm

      Diagnosis of CIDP can be tricky. Patient presentations can be variable. I was diagnosed after an extensive history was taken by my neurologist, a physical examination, 28 vials of blood drawn and tested, an EMG/NCV, MRIs of my spine and brain, genetic testing, and a punch skin biopsy. It’s like a puzzle; you have to put all the pieces together. My good response to IVIG also confirmed the diagnosis. By the way, cool screen name.

    • Anonymous
      May 12, 2011 at 10:50 pm

      Goodney, Thanks for telling me what all you had to go through to be diagnosed. I’ve had most of the same tests except for the genetic testing…but my neuro is planning on doing it. He is trying to get the results of all the other tests that I’ve had done so that I don’t have to repeat them. Although I’m going for an MRI of my spine tomorrow.
      I’ve been on IVIG for years because of my immune deficiency, but last year my old neuro took my treatments over from my Immunologist. He decided to double the amount that I was getting, and I’ve been doing okay on it. Even if the outcome is that I don’t have CIDP, I’ll still have to continue the IVIG for the CVID. So it’s really hard to notice a difference if it’s helping the neuropathy or not.
      My old neurologist told me not too long ago that my CIDP was active…and I have been feeling quite a bit weaker. Now I just don’t know what to think because my new neuro is questioning everything. It’s been 3 years since I was diagnosed…and now all of the sudden I don’t know if I even have it!! I do know that I do have some type of neuropathy because I have a lot of numbness and weakness in my legs, and I have a foot drop also.
      I really appreciate anyone who lets me know how you were diagnosed…it really helps me a lot! Thanks Goodney!

    • May 13, 2011 at 8:02 pm

      I was diagnosed through emg/ncv followed by labs. during the labs a paraneolpastic panel was run–in which an abnormal antibody was found. After finding the antibody my neurologist diagnosed me and never mentioned any more testing. I am going out to mayo next month and will be curious if they will confirm the diagnosis due to the antibody or will do more extensive tests—will let you know Lori

    • Anonymous
      May 13, 2011 at 10:00 pm

      Thank you Lori for telling me your story…it’s just so weird to me that all of the sudden this new neuro wants to do all of this testing to confirm the CIDP when for the past 3 years everyone was positive that I had it. It’s so hard for me to trust doctors, and now I feel as if my old neuro’s didn’t know what they were talking about! I don’t know what to think about all of this…I feel like I’m just in limbo right now until all of the tests are done, and my new neuro has all of my records. I hate not knowing…
      And I would love to know the results of your tests Lori. Thank you so much!

    • Anonymous
      May 15, 2011 at 1:18 am

      I was told by a Neuro at the Cleveland Clinic that only a fraction of patients who are diagnosed with CIDP actually have it. I was diagnosed with an EMG. Later it was confirmed with a spinal tap. Because I had been paralyzed and had so much sensory loss, a Neuro at the Mayo Clinic did a nerve biopsy to check for Vasulitis. That was negative- but the CIDP was conclusive.

    • Anonymous
      May 15, 2011 at 8:23 am

      My Husband was recently diagnosed with IVIG. He got really sick in july of 2009 and was in the ICU .It was never determine exactly what he had ,but since then he has rapidly declined,closed his Law practice and spents his time in ? I am scared and confussed.I amnew to this and don’t knoe how to post a new tsomet.Please give us some help through advice.We are losing our minds. I don’t knoe how to help him!

    • Anonymous
      May 15, 2011 at 6:49 pm


      Hopefully someone has responded to you by now. Am assuming you mean CIDP and that he was treated with IVIG. Did he respond to the IVIG? Did he have the ‘loading’ dose series of 5? What kind of testing was done? Surgical biopsies of nerve and muscle? Spinal tap?

      I understand your fear. But you must act and I know sometimes you will be struggling with the patient as well as the medical system.

      Where was he diagnosed? Do you have insurace? Part of the issue with my daughter was no insurance so until she was practically dead I couldnot even get any medical attention for her.

      Nicsmom – Carol

      P.S. There are instructions on how to start a new thread by clicking on FAZ above, I think that is the right place. I’ve only started anew thread once, I usually just read or occasionally submit a reply.

    • Anonymous
      May 16, 2011 at 12:27 am

      Thank you such much for responding! Sorry for all the typo’s .My computer does that a lot. He has state insurance(medicaid) he is supposed to get a nerve biop. this week.It looks like,from everything I have researched that the MAYO clinic is the place to be . I have never heard of the IVIG having different strengths .I thought it was all the same . IVIG makes him so sick .It that normal. Will he ever feel good again? What have you found that works for pain. Any advise would be great.I feel so completely dsperate and helpless.

    • Anonymous
      May 16, 2011 at 5:29 am

      Hi Merri:

      I sometimes think this disease is harder on the spouse’s, hang in there. After being diagnosed I was started on IvIG, 1 gram a day for four days per month. This dosage was based on the severity of my condition and my size (bigger than a bread box). I had mild to moderate reaction to the IvIG but after four months my overall condition was much worse, had to use a walker, wake up have breakfast take a nap, etc.

      Next tried large amounts of Corticosteroid, again no improvement now I take 3000mg of cellcept plus 20mg of prednisone daily and after three months I have regained about 90% in my legs, 50% in my hands and my energy level is getting better every day and I have more “good days than bad”. Now I can’t stay on these meds for too long as the side effects can be deadly, so we will reduce the dosage to find a lowest useful level. What comes after this, don’t know but am hopeful AND SO SHOULD YOU BE!

      There is no one treatment would be nice but the reality is we all have different symptoms, sensitivity to different drugs, size and so on. If one treatment doesn’t work there are others, be patient, keep YOUR self healthy, eat right, workout, whatever you need to do stay healthy and n good spirits ( I know, the best you can).

      Good luck and God bless you both.

    • May 17, 2011 at 9:07 am

      I was diagnosed about 2 months after initial numbness onset. I had the flu vaccine in November 2010 and 10 days after the vaccine my right foot went numb. After seeing my GP and an orthopedic doctor thinking maybe my hands was carpel tunel and my foot was a pinched nerve or something. I took it upon myself to see a neurologist. She did EMG and NCS first thing and said I have moderate demyelinization. So she ordered more tests, she did a whole batch of blood tests to rule out any underlying disease that could be causing the demyelinazation. Everything was normal. So then she recommended a nerve biopsy which I declined. From everything I hear the nerve biopsy is not conslusive and it leaves you with permanent damage and sometimes the pain from the biopsy is worse than what I already have. So she did an MRI of the spine and a Lumbar punch. My MRI was negative for MS and the Lumbar punch showed increased protein in my spinal fluid. So basing her diagnosis on clinical symptoms and all the tests, mainly the EMG, NCS an lumbar punch she said it is most likely CIDP. We did IVIG and I responded to the treatment. So I guess I am comfortable with the diagnosis. But I do have an appointment at the U of MN with a CIDP specialist in two weeks just to get his take on treatment plans for CIDP. I might not switch to him as my neurologist but would at least like to see a specialist to see what he has to say.

    • Anonymous
      May 17, 2011 at 3:33 pm

      I first had problems in October of 2009. I had five days of IVIG, and was much better when I was released. My neurologist thought at the time that it was GBS, but warned me that my problem might also be a chronic form of the disease. When my symptoms returned, I went back to him, and he immediately suspected CIDP.

      He explained to me that there are several criteria that must be met, to meet the diagnosis of CIDP:
      [*]Symmetrical weakness in both legs or arms (legs in my case) that persists for more than 8 weeks, or returns after a remission.
      [*]Loss of nerve conduction as measured by EMG. I think there is a specific conduction pattern they look for, but I am not technically astute enough to know what that is.
      [*]High proteins
      [/LIST]in spinal fluid, as determined by spinal tap.

      I met all these criteria. He started me on Prednisone, which really did not help. He then switched to IVIG, which really [I]does[/I] help. The fact that IVIG works supports the diagnosis of CIDP, since there are some similar conditions, which do not respond to IVIG.

    • Anonymous
      July 1, 2011 at 4:16 pm

      Unfortunately CIDP is one of those illnesses that is a diagnosis of elimination. I had pretty classic symptoms of CIDP – started in July 1992 with symmetric numbness/weakness in extremities (fingers/hands and feet) that slowly progressed further and further up arms/legs etc. until I could barely do any normal activities. My Princeton neurologist had to do a lot of different tests to eliminate other common causes of neuropathy such as lead poisoning, diabetes, etc. (won’t bore you with all the tests I had before getting referred to a neurologist). After such tests he did EMG and NCV and that pretty much nailed it, as he found nerve conduction taking place at about a third the rate of normal speed and in many areas completely blocked. I never had a sural nerve biopsy or spinal tap. I was referred to a neurologist at the Hospital of the University of Pennsylvania for diagnosis confirmation and treatment. The Penn neuro 100% agreed with the diagnosis.