[bluesky]

My head is spinning!!! I saw the mg specialists today who I've waited months to see. I was really trying to buck myself up and not give in to despair. Really though, I felt like I was walking down to the gallows. I was trying to tell myelf this isn't the end of the line, etc. etc. I was sure I was going to hear the same nonsense: you don't have mg because there are lots of false positives, because it's not a disease that relapses and remits. The usual. But after he took my history and he started asking all the right questions (like have you had a scan for thymoma - I had to beg the neurologist in my home state for that and he insisted mg had nothing to do with thymoma) he said: "Well of course you have mg, everyone with a positive antibody has mg" (and plus, I arrive, thank goodness, with a nasty case of ptsosis). Oh my gosh. I had a smile on my face three miles wide.

But then he said something that I would never, ever have guessed even if you had given me a million years to think of it. He said, "but I don't think that's why you have breathing problems. People with mg don't have low oxy sats". I was so stunned it took me another 10 minutes to form my question into words. I asked him, isn't that why people die? And, don't the oxy sats tank before they go into crisis? And he said yes, that's true, but then they go into crisis. It doesn't happen all the time when they're sitting around.

So. I'm in a state of shock. I'm really happy. I have a diagnosis. I have a foot in the door. This guy has a good reputation and he's smart and he's thorough and he ordered a lot of tests. He's going to stick with me. But he thinks I only have a mild case of mg and it's not what's making me so breathless and exhausted and sick. Okay, he does have a good point which is that I pass that stupid neurology exam with flying colors which I always do. When I'm sick I can't hold up a blow dryer without feeling exhausted and having my muscles hurt like I'm holding up a barbell. I read a kindle instead of books because it's lighter and I sort of lie down and lean my arm backwards on a pillow while I'm holding it. But I never get weak enough that my arms go down when the neurologists pushes on it or I hold them out for 15 minutes. Also, it's not my shoulders but my triceps that hurt. So, yah, he does have a point there. And also, he's smart, he cares and he's extremely well recommended and he's the first doctor I have trusted. And I've gone to SIX neurologists since I first got the positive antibodies back last January.

Still, I'm stubborn. Obviously!! I still think mg is my problem and all of my problem. But I've got my foot in the door. I'm going to go through all the tests. I'm going to listen to what he says. And then I'm going to beg for steroids because I'm going to lose my house, I'm a widow and I have two beautiful children to raise and get through college and they don't deserve a dead father and a sick mother.

Please, what does everyone think?

Ally