How have you guys done it? I am about to either scream, cry, or laugh hysterically, not sure which one yet! I went to neuro for something that has absolutley nothing to do with MG. Well in the labs she ran included the acetylcholine receptor antibodys. These came back positive, surpise! So, next we do a CT of my chest. That showed an enlarged thymus. I am thinking, finally! Something that explains the weakness I have had over the past several years. I am so excited to have an answer and to start treatment. Maybe see what symptoms this was causing. I even called the docs office to see if they even needed to run the single fiber emg, after all I have two of the antibodies and my thymus is enlarged, I mean duh! They said no, we had to do it. So, hear we go with the single fiber emg. NEGATIVE! WHAT DO YOU MEAN NEGATIVE?!!?
So this doc is now telling me that I have one test that tells me with almost absolute certainty that you have MG and you have another test that tells you with the same degree of certainty that you don't have it. WHAT IN THE WORLD??!! He told me he has no idea what I have and that he is recommending to my regular neuro (btw, two months ago I had 2 doctors, now I don't even know how many doctors I have) that we have a medication trial. If I respond to the treatment, we know I have it. If I don't respond, I have to have another single fiber emg, this time of my face and eye.
OMG, WHAT?? This is where I want to either scream, cry or laugh hysterically. I mean, is there any other way to respond to this? I think I have been extreamly patient through all this, but this is getting out of hand. I appreciate my instant gratification and this is nothing like it.
Anyway, that was my little vent. Mostly, I just want to know if there are other people with similiar results. I just don't understand how I can have the antibodies and an enlarged thymus but have a normal emg. What adds to the pile o' luv is that the same darn thing happen with my lupus tests. One test said I almost certainly do have it and other says, nope you don't. My lovely primary doctor told me I need to not be so strange. I told her she was right.