Totally lost

    • Anonymous
      June 25, 2007 at 10:55 am

      I was diagnosed with CIDP in early 2006. Last June I went through a five day cycle of IVIG, and three biweekly follow-up cycles. I got little or no relief, but I got a very severe rash that was as disruptive as the pain. At that time, with the encouragement of my neurologist in Philadelphia, I consulted another neurologist, who I was told was among the best in the country. Meanwhile, the fatigue, pain and discomfort have continued to worsen.

      I saw this doctor last week, and had a very thourough EMG/NCS. I also had extensive bloodwork. CT scans and MRI’s. After all that, I was told that I don’t have CIDP after all, but- and this is the part I can’t fathom- he has no idea what it actually is. The best he could offer me, at this point, is more meds to control the pain and fatigue.

      So now what? Do I accept this and resign myself to continued deterioration? Do I consult yet another neurologist, when I’ve already seen the one who’s considered best?

    • Anonymous
      June 25, 2007 at 11:03 am

      You find another neurologist. And you keep seeing new ones until someone can give you a diagnosis. Even the best dr’s can make mistakes or miss something.

      You could have a variant of CIDP that he’s just not familiar with. I firmly believe that they are many variants that dr’s aren’t aware of because CIDP affects each patient differently.

      Don’t give up! Keep searching to get the answers that you need!


    • June 25, 2007 at 11:05 am

      I am so sorry!

      I hope you find a dx soon. Are there any ideas? CMT, MS, have you had the full metals blood work up? Lymes disease? Please keep us posted! I will pray for you!

      Dawn Kevies mom 😮

    • Anonymous
      June 25, 2007 at 12:04 pm

      I have a story oddly similar to yours. I was diagnosed with CIDP in April 07 and then told by the same neurologist 2 months later that he was wrong. He has no clue what to tell me right now. Doctors get lost too. They follow a trail they have experience with only to abandon it when the answers don’t fit an exact pattern. I too wonder which way to go from here. All I can advise you to do is summon the strength to continue the search for your answer. The doctors might lose their way or fall back on an easier answer, but you can’t settle for that. As difficult as the struggle is, you have to put your mind/body/spirit in to the struggle and keep going. Along with that, all of us here will help with support, advice, information, or whatever we can offer.

    • Anonymous
      June 25, 2007 at 4:36 pm

      Go to Mayo! Get a dx.
      my neuro doesn’t know what my dx should be, because all of my symptoms don’t exactly fit into one category-at least by the old book that is. my dr is now sending me up to U of M for a 3rd opinion. My pcp, who has known me for 20 plus years, dx me with cidp, after looking back on my symptoms and tests results. just don’t give up on yourself, I know its a long hard road your traveling on, but it is well worth the time and energy invested to put your mind at ease. keep in mind, when a dr is said to be the best, it might not mean the same as what you interprut it to mean. i have heard that line many times, and it turned out to be quite the opposite.

    • Anonymous
      June 25, 2007 at 6:15 pm

      Hi Bill,

      How difficult it must be for you to suddenly be left without a clue – especially by you own neurologist! I hope that you are able to find someone to help you find a way to cope with your illness. Some of the members here have an extensive list of highly recommended physicians – mabe one is in your area.

      Here is an article that may be similar to your situation in some regards:


      A woman, initially diagnosed w/gbs, reacted w/ a “a petechial rash” in response to ivig. Other symptoms were noticed, and after more testing, her diagnosis was changed. The only indication in the beginning that she had something other than gbs was the rash in response to ivig.

      “With these results, a diagnosis of cutaneous vasculitis and glomerulonephritis secondary to cryoglobulinaemia was made and a further dose of i.v. methylprednisolone 500 mg given on day 9. In addition, the diagnosis of GBS was critically reassessed.”

      This article is a full-length article w/details of tests and results that may be of help. Get all your past medical records and take a look to see what tests you might have had (or need to have).

      Hoping you’ll have some answers soon,


    • Anonymous
      June 26, 2007 at 12:36 am

      Hello Bill,

      I agree with the others who say to continue to try to get a diagnosis. Easy for me to say, though, so much harder for you to do. And to live with the uncertainty; how frustrating at the least and scary too. If I can help, let me know.

      Those of us who get a diagnosis are actually the lucky ones. Not too long ago, an article by Norman Latov of Cornell University in Neurology Now (September/October 2006) said “in one-quarter and one-third of patients with neuropathy, no cause can be found.” This is not to say that you should not get another opinion—in fact, Dr. Latov advises that you should—but it is to say that medicine does not know everything yet. I truly wish that it were not so and I hope that your search will be successful.

      Godspeed with your search, and keep us posted.

    • Anonymous
      June 26, 2007 at 9:33 am

      Hate to name drop nut was it Dr S Bird? or Castellvi? @ HUP? I used to live there and ended up going to Johns Hopkins in Bal to see Vinay Chaudray. See if you can get a ref.


    • Anonymous
      June 26, 2007 at 10:28 am

      Michael- neither of those… my neuro in Philly encouraged me to see this doc. I’ll explain in a personal note, prefer not to post negatives/ names in the forum