Annie, I'm so glad they're going to retest your antibodies! When I had mine done the second time, the neuro said, "I just had a patient who tested negative and then positive." When I got mine tested the third time, he said, "I just had a patient who tested negative twice, and then positive." So obviously it's not unheard of.

Abby

Abby, Sorry no I am not getting my antibodies redone. That is another test that my pulmonologist asked my neuro to do and she refused. She HAD promised my daughter she would after my eyes tested positive in May and I was getting worse so my daughter called her and an appoitment was set up to see her and do the blood test. Neuro backed out saying "didnt you have 2 (already)?" She was asking me! I couldnt remember exactly. I had almost 2 as Mayo didnt do the group again.

Sorry if I wrote something that suggested I was. I am thinking very hard about going to the local neuro and seeing if he will do it. I am not sure how much he will do as he is not a muscle neuro. To some people he is a miracle worker. But he is under review by the state medical society.

My daughter went to him for her seizures and had to switch after his mother who is his office manager made it impossible for her to get her medication and such. It is a weird set up but locally the only place I havent been at all. My only other option for maybe getting another test and at least mestinon if the neuro at the univeristy stops giving it to me after this recent neuro disaster last month.

I hope something works out. For now given how bad this last appointment was, all the misunderstandings I will bre deeply grateful to just come out of it will my pulmo staying on my case and my side and able to get presciption for mestinon.

I have the opportunity to see an impartial doc around my eyes but it is an hour and a half away. My daughter doesnt want to do it. Or I should say she is burned out and wishes her sister would pitch in which isnt happening. It is hurtful that the girls dont understand as well as you all do that this is such a hard disease to diagnose.

For now I need to focus on my eyes and my breathing /throat. If they have to be dealt with without a diagnosis so be it. I guess it will be back to gather evidence again. I am glad that I have the winter improvement to strength in legs and arms to at least give me some pieces relief.

Annie59