GSB residuals or new attack?

    • Ottawa help
      August 30, 2011 at 11:04 pm

      My husband had been doing really well until 4 weeks ago , after a virus and he started having symptoms again . They are pretty much in the same places as before-feet, arms,legs and hands with some cranial involvement of sensory nerves.

      His diagnosis 18 months ago was small fibre variant of GBS. He has had one round of IVIG after the first attack. Could this be residulas or is it another attack of GBS?

      Any one out there have some information on GBS residulas?
      Thanks

    • Ottawa help
      August 31, 2011 at 8:04 am

      The problem is it is weird! Is was called a variant of GBS by Dr. Vera Bril at Toronto General- one of Canada’s best in the field. The tests did not indicate CIDP. The small fibre nerve biopsy was positive but the EMG’s and are all negative.

      He did improve with IVIG last time – this time the muscle weakness is not the issure-mainly sensory but lots of tremors and tinnitis, etc. this round started after a virus as did the first one 18 months ago.

      Can you give me a web site to find the Parry and Steinberg article?

    • Anonymous
      September 1, 2011 at 9:47 am

      Ottawa’s DH situation prompts me to ask the following:
      Can another round of IVIG help him or would it be detrimental because the symptoms they’re seeing now could be residuals of the GBS coming out of the blue?

      What exactly symptoms are you seeing, Ottawa? I think I’d like a doc’s opinion on the situation because it sounded that the symptoms are spreading slowly over a long time (4weeks, right?).
      It’s terrifying that illnesses don’t have a clear fact based history and doctors cannot determine what exactly it is.

      When we saw DH’s neuro 2 weeks ago, I asked him how differently my DH would feel if he gets a cold or virus. His response was ‘just like general population’. So, my interpretation was that fatigue, tiredness, irritability, body ache would be normal (that’s how feel when I get cold), but he shouldn’t feel increased tingles, increasing numbness in his extremities and losing control/balance of those extermities. If weakness takes over the body and loses balance, then it’s a sign that it’s more than the virus. Would it be a correct interpretation?

    • Ottawa help
      September 1, 2011 at 10:26 pm

      I agree with you . The increase in tingling, tremors are not part of a normal virus . It is so frustrating that the doctors don’t or can’t tell you what to expect.

      We have an appointment with his neurologist next Wednesday. The sad part is that even if it is another attack , in Canada they will not give him IVIG unless it is text book case of GBS or CIDP. His is a variant (small fibre GBS) so he can’t get IVIG. That is why he had to go to NYC when he first developed it.We had to pay for all of it – no insurance coverage in Canada.

      We are hoping the neuro can prescribe something to help. Thanks for you advice.

    • Anonymous
      September 6, 2011 at 6:48 pm

      Each of my relapses have been subsequent to a viral infection. My MD will not differentiate my dx as either relapsing GBS or CIDP. I have not had a biopsy. I do respond to IVIg. In addition to tingling/numbness, I get difficulty breathing, frequent urination and increased weakness. I am pretty weak all the time, tho. Hope this helps you.

    • Ottawa help
      September 6, 2011 at 10:53 pm

      It sounds like you are on the same track as my husband. Where do you live?

      In Canada it is VERY difficult to get IVIG unless you fit the traditional definition of CIDP or GBS. Did your dr ever try a round of steroids?

      How hard was it for you to get more than one round of IVIG?