Hi; New member too

May 22, 2007 at 2:46 pm

Hi Shelley,

I’m wondering if your poor sister-in-law might be oddly lucky. That is, if she has a diagnosis and someone there is giving her treatment, I think she will get better. I’m wondering if it is not better to have an acute episode immediately versus mild symptoms that never get diagnosed until it is too late to do anything meaningful.

I may have been exposed to whatever produced the GQ1B antibody as early as 1996. I’m not sure. I had my first incident of diplopia in 1999. I had the first loss of sensation in my legs in 2003. I was suspected for more than a year in having myasthenia gravis. Then the suspicion was on MS. In the past year I was tested for this GQ1B antibody and that test turned out positive. I seem to have no other testable problems, such as demylination, but I manifest leg pain and spams, a lack of balance and difficulty walking. I now use a cane.

It is only recently I have had anything close to a diagnosis (Miller Fisher Syndrome) and it is provisional. The doctor who asserted this has no treatment to offer, as if I could only qualify for IVg or other things if I had been tested for GQ1B years ago. So it seems I am stuck.

I hope your situation turns out better.