What about CIDP Auto antibody

    • Anonymous
      September 23, 2008 at 5:45 am

      I have been reading most of your post, and nobody says a thing about serum testing or auto antibody, like GM1, or other serum tests, like SED rate testing.
      Did you?

    • Anonymous
      September 23, 2008 at 8:17 am

      I do remember a serum test. Not exactly sure what it was called…spep I believe and also a sed rate. I saw the results of all of my blood work and the sed rate was high. I looked it up and it’s an indicator of inflammation in the body if I remember right.

      Stacey

    • Anonymous
      September 23, 2008 at 10:04 am

      Yep, Emily was tested for everything under the sun. I know they did a whole slew of auto antibody tests on her. Also her SED rate was really high before dx. If you take IVIG the SED rate will be high from that as well.

      Kelly

    • Anonymous
      September 23, 2008 at 2:12 pm

      [QUOTE=pjthomasset]I have been reading most of your post, and nobody says a thing about serum testing or auto antibody, like GM1, or other serum tests, like SED rate testing.
      Did you?[/QUOTE]
      I am being tested for antiMAG (myelin associated glycoprotein) autoantibodies which are positive. My neuro suspected that because of presenting symptoms, mainly sensory, and slow progression over years.

    • Anonymous
      September 23, 2008 at 8:40 pm

      I did positive for anti-GD1a that destroys myelin and axons.
      I had 1/15000, really too high said the neuro, and got down to 1/5000 after 4 month taking sulfasalazine drug, 3000 mg/day.
      I can not afford for ivig or Cellcept. and is not covered by health services here.

    • Anonymous
      September 28, 2008 at 5:12 am

      So, what did the neuro give as a diagnosis for your test results? Or is he waiting for more information to make a decision?

      CIDP is sometimes the last one on the food chain. I mean CIDP is sometimes diagnosed by eliminating all the other things down that pathway.

      Demyelinating polyneuropathies can be diabetic, heavy metals, vitamin defeciency, genetic, and so on. The more things that get eliminated, sometimes leave CIDP, which is then treated to see if there is a response. Depending on the response to treatment, CIDP can be diagnosed. In some cases they find out that way.

      There are also other treatments besides Cellcept and IVIG. CIDP usually responds to short term- high dose corticosteroids like prednisone, which is inexpensive. It has long term consequences, but has short term theraputic benefit. Aziathropine (Imuran) is another relatively inexpensive immunosuppressant. And there are pain management drugs that can be helpful as well. Explore all your options !!

    • Anonymous
      September 28, 2008 at 7:31 am

      Well….”CIDP” does not exist in spanish (I´m in Uruguay). The two NVC and EMG I had say I have a motor axonal peripheral neuropathy. I looked for GD1a in the web and I found that it was the GBS typical autoantibody.
      GBS is acute, CIDP is slow progressive, I guess what I have is CIDP.
      My neuro told me prednisone was not good for this type of neuropathy,
      the same interferon or other MS drugs. I continued woth sulfasalazine, the ankylosing spondylitis drug I was taking before see him, and it was good to decrease the GD1a titles.

    • Anonymous
      September 28, 2008 at 11:41 pm

      [QUOTE=pjthomasset]I did positive for anti-GD1a that destroys myelin and axons.
      I had 1/15000, really too high said the neuro, and got down to 1/5000 after 4 month taking sulfasalazine drug, 3000 mg/day.
      I can not afford for ivig or Cellcept. and is not covered by health services here.[/QUOTE]
      Hello. I read with interest that you are being treated with sulfasalazine. I tried to search for that drug and CIDP and cannot find any literature. Do you have any literature/articles about it being effective for CIDP? If so, I would be most interested in reading them. I have often wondered why antibiotics aren’t are first line treatment since CIDP is autoimmune, and autoimmune diseases such as rheumatoid arthritis appear responsive to antibiotics. Thank you for any info. you may provide.
      Laurel

    • Anonymous
      September 29, 2008 at 5:53 am

      I was on sulfasalazine because I was dignosed spondyloarthropaty the cousin of ankylosing spondylitis, and because of my uveitis.
      As a secondary efect it seems to worked on the CIDP, reducing by 3 the antibody titres.
      My neuro agreed to this treatment. He is also an inmunologist.
      He is an eminence in MS here in uruguay, he is or was the president of lactrims.
      I also did not found any info on the web about sulfasalazine and CIDP.
      There are some works on MS, proving that it didn´t work for it.
      If you look there is some info about fusidin or sodium fusidate, that works the same way as sulfasalazine, reducing Th1 and improving Th2.
      The same with glucosamine sulfate, I leave it for the relapses, because it works on the Th1/Th2 balance, not in the absolute values of them.
      Right now I stoped the sulfasalazine, because my wife wants to get pregnant.

    • Anonymous
      September 29, 2008 at 10:29 pm

      [QUOTE=pjthomasset]I was on sulfasalazine because I was dignosed spondyloarthropaty the cousin of ankylosing spondylitis, and because of my uveitis.
      As a secondary efect it seems to worked on the CIDP, reducing by 3 the antibody titres.
      My neuro agreed to this treatment. He is also an inmunologist.
      He is an eminence in MS here in uruguay, he is or was the president of lactrims.
      I also did not found any info on the web about sulfasalazine and CIDP.
      There are some works on MS, proving that it didn´t work for it.
      If you look there is some info about fusidin or sodium fusidate, that works the same way as sulfasalazine, reducing Th1 and improving Th2.
      The same with glucosamine sulfate, I leave it for the relapses, because it works on the Th1/Th2 balance, not in the absolute values of them.
      Right now I stoped the sulfasalazine, because my wife wants to get pregnant.[/QUOTE]
      Thanks for the information Pablo. I will continue reading about fusidin and sodium fusidate.
      Laurel

    • Anonymous
      October 21, 2008 at 12:45 pm

      If somebody want to know about it, here are Oct 2008 neurolab test;
      Anti sulfatid 1/2500, Anti galatocerebrosid 1/3500, Anti MAG 1/1500
      Anti GD1a 1/7500, Anti GQ1b 1/150, Anti GM1 1/750, Anti GM2 1/3000,
      Anti GM3 1/3500, Anti GM4 1/500
      I have strong fatigue, can walk quite well, some sciatica in one leg,
      back pain, pharestias and pain in both arms, and face.

      Best wishes,
      Pablo,