• February 26, 2018 at 12:22 am

      If you had GBS how would you know if it’s CIPD? I still have the same problems I had a year ago but I’m a bit stronger now and can walk on a walker almost by myself and I have some range of movement I didn’t have when this stareted a year ago.

    • B
      February 26, 2018 at 11:56 pm

      I am pasting this from another part of this website. This is one of the most common forms of treatment for CIDP.

      “High dose Intravenous Immune Globulins (IVIG) is the only drug that has FDA, Canadian, and European approval for treatment of CIDP. IVIG contains naturally occurring antibodies obtained from healthy volunteers. IVIG is given through a vein over the course of several hours. Newer preparations of higher concentrations that can be given under the skin (subcutaneous) are currently being tested in controlled trials in CIDP patients.”

    • February 27, 2018 at 2:38 am

      Ok thank you. They say it was GBS but didn’t know at the time so I never got either of the two main treatments offered, the IGIG or the plasmaferesis thing I have been reading about on many sites. I’m trying to learn as much as I can.

    • February 27, 2018 at 2:39 am

      Not many people here.

    • B
      February 27, 2018 at 10:32 am

      Terry S., if you are looking for a larger, more active forum, there are a few CIDP/GBS closed groups on facebook.

    • GH
      February 28, 2018 at 11:02 pm

      I know I have CIDP because my neurologist calls it that. To be more precise, initially there was some question, because I am atypical under either diagnosis. When I asked my neurologist if he had decided it was CIDP, he said “that’s what we are treating you for.” The significance to naming the disorder is that the treatment plan and expectations for the progress will differ between the two. But there is a lot of variation in how these disorders present. What matters is getting the most effective treatment for whatever you have. In my case, things worked out fairly well, even though I am atypical. I don’t care what they call it.

    • GH
      February 28, 2018 at 11:04 pm

      Terry, while there are not a lot of regular contributers here, the site is more substantive since the people who more interested in social networking went over to Facebook.

    • GH
      February 28, 2018 at 11:08 pm

      Both GBS and CIDP can be treated with IvIg and plasmapheresis. I had both. I started on IvIg before the diagnosis was firm, because it is usually good treatment in either case. What was your diagnosis at the outset that you were not given IvIg?

    • March 1, 2018 at 12:42 am

      I had radiation just before it started so all of the doctors involved thought it was a radiation injury in my back. It’s possible that the course of the syndrome was done and that could be why nothing was picked up in the L puncture. It was done about the third week of being in the hospital.

    • B
      March 1, 2018 at 11:12 am

      Sorry, I realized I posted the definition of IVIG here in this post when the inquiry on what IVIG is was asked in another post. I apologize for any confusion.

      I have a similar situation to GH in that my case is “atypical”. But I have a constellation of symptoms that are not explained by anything else, I respond positively to IVIG and my symptoms often increase before the next dose. So whatever we call it, IVIG works.

      I understand that these diseases and all of the variants are likely a spectrum and not one distinct disease. My opinion is that additional variants will continue to be defined over time and many of us “atypical” folks may find a variant home.

      I also agree that the quality of discussions on this forum are substantive and informative. There are a couple of great members (GH, JK) that know their stuff and do a lot of research. The facebook forums do have a social aspect, but there are knowledgeable people on there too and a lot of useful information is shared.