Ally,

I am sorry you have to go through this. I wish doctors were more supportive.

Very smart to ask for your medical records, we should all do this.

It sounds like you do have MG. My MG symptoms started like what you describe, with eye problems and droopy eyelides ...but my symptoms progressed from there to include just about every possible MG symptom except trouble breathing.

About the antibody tests:
-My first test came back "Positive" for the Bab (binding antibodies) Test and "Normal" for the NAb (neutralizing antibodies) Test.

-My more recent blood samples (after MG diagnosis) show "Borderline" for ACHr Antibody and "Negative" for MuSK Antibody.

My doctor said, after getting the recent blood test done, that all my symptoms are "consistant with MG" even though my recent blood work doesn't confirm that I have MG, also since the Mestinon was helping that he would continue the treatment. I sort of felt like he was taking away my diagnosis and was left a little confused with the "consistant with MG" comment.

Anyway, I think my test results are similar to yours, with low values. But if you have the antibodies even in low amounts, you have the antibodies.

I want to tell you that my doctor saw me when I only had eye trouble and droopy eyelids but no limb weakness. He diagnosed me based on observation and the blood and nerve tests. The thing that makes me mad is that he got the test results but waited until my next doctors appointment to start me on Mestinon. During that month of waiting, my MG progressed and could have been prevented if he would have just called! I am still mad about this, but I am still thankful to get a relatively fast diagnosis. So, yes, I HAD confirmed MG without limb weakness, even though now I do have limb weakness

I had "jitter" on the nerve test, I still really don't understand what it means.

Will your new doctor start you on Mestinon? Even if is just as a trial? I recommend asking about it since it sounds like all your test results and symptoms were the same as mine when I was diagnosed.

Hopefully you only have MG and once it is treated, maybe you will find that you don't have this other disease.

I know for me, that time waiting for a diagnosis was awful (and I only had to wait about 1 month! I feel so bad for those who wait even a day longer! ). I was waiting and my MG progressed to the point where I thought I was dying. I was losing weight because I couldn't eat and I could barely get out of bed on the rare occasion, I couldn't shower or brush my hair or teeth, and I could barely talk and I coudn't focus my eyes on anything. I truly thought I was near death, and maybe I was I don't know. I had decided that if it was my time to die then I was going to just die and not go to the emergency room - I was so depressed and weak. Please understand that I wasn't suicidal, I just didn't see the point in living if that is what it was going to be like. Maybe I would have felt differently if my Neuro had talked to me in a positive way, but he didn't give me any hope at all initially...he made me think I had a mystery disease. I am usually such a positive person, I don't know why I gave up so easily, it is not usually in me to give up even when I am losing, I think it was all the mind fog that I had at the time (and still have on occasion). I still remember that time as though it was a dream, I don't have a clear memory of all that time I spent in bed.

I typed the above long paragraph because I wanted to say don't give up hope and don't stop fighting. I am glad you found a better Neuro.

It still amazes me that this little Mestinon pill can take away the worst of those symptoms. Every day I am thankful for Mestinon as silly as that sounds. If I were religous I would say a prayer every time I take a pill, and I suppose in my own way I do give a prayer of thanks it is just not to any particular god. As it is, I am thankful for each day of my life.

Please push for a diagnosis or at least a trial on Mestinon just in case it might help. Of course, I am not a doctor, but my opinion is that doctors should trial people on Mestinon if MG is a possibility (of course after the proper tests are done since Mestinon can effect test results).

I hope any of what I typed helps you. I feel for you and everyone else who is undiagnosed. I wish I could help more.