CIDP, distal variant

    • Anonymous
      July 5, 2007 at 8:19 pm

      Hello everyone.

      I got my dr’s notes/records today from January to June. I wanted to compare my own notes from the ones I already had since last September.
      Among many other things, one statement he made was that while everything points to CIDP, I have this atypical distal symptom. I cant remember the exact wording of it right now but in another area he said chronic inflammatory demyelating polyneuratical-distal variant.

      I know distal means furthest from the point of origination but this is the first I’d seen or heard this “variant”.

      He also said he was going to do a bunch of blood work after the myeloma bone scan came back and the blood work never happened. I think he forgot.
      He wanted to do the serum electropherisis and other tests for metals I think and HIV. I had those blood tests in September. I didnt do the 24 hour urine spep test.
      The more I read, the more confused I am that he didnt do or remember to do a few things. I dont know. I’m going to review them again when I’m not so tired and compare the EMG from April to the two prior I’d had. (One in Sept and again in Nov)…last year.

      But, if anyone has heard of this distal variant or could explain it to me, I’d sure appreciate it.

      I took today off b/c of the 4th and we were swimming all day today. Another hot and sunny one in Omaha. Upper 90’s expected for the weekend.

      thanks in advance for your help guys !


    • Anonymous
      July 5, 2007 at 9:48 pm

      I found this on [[url]][/url] I don’t know if it helps. Hopefully someone else can be more helpful

      Intravenous immunoglobulin as first treatment in diabetics with concomitant [COLOR=”Blue”]distal[/COLOR] symmetric axonal polyneuropathy and CIDP.

      Cocito D, Ciaramitaro P, Isoardo G, Barbero P, Migliaretti G, Pipieri A, Proto G, Quadri R, Bergamasco B, Durelli L. Turin, Italy.

      The authors investigated the impact of IVIg as first line treatment of diabetic patients suffering from chronic inflammatory demyelinating polyneuropathy (CIDP) concomitant with distal symmetric axonal polyneuropathy. Nine patients with these clinical and electrophysiological features were treated with IVIg (0.4 g/Kg/day for 5 days). Clinical and electrophysiological evaluations were performed before and after treatment. Following IVIg treatment there was no significant improvement in clinical deficit. However, there was a significant and persistent decrease in the Rankin scale score and an improvement in the demyelinating feature on nerve conduction studies. Our findings suggest that IVIg had small but detectable beneficial effects on diabetic patients with CIDP and a high degree of axonal damage.

      Arch Neurol. 2002 May;59(5):758-65.

    • Anonymous
      July 5, 2007 at 9:51 pm

      I Googled “distal variants of chronic inflammatory demyelinating polyneuropathy” and a lot of links showed up. I don’t have time to go through them all but it’s something that you could do when you aren’t tired and have the time.

      I wish that dr’s wouldn’t speak or write in their “dr speak”. It’s SO hard for patients to understand it. They can write in their “dr speak” but they should have someone to translate records into layman’s terms before giving them to their patients. This has become one of my MANY pet-peeve’s about dr’s lately. Can you tell?

      Good luck! I hope you find some answers soon.