2:53pm July 17, 2014

So the test I had is called a single-fiber EMG.

And it’s the most sensitive test for myasthenia gravis out there, it picks up on something like 95-99% of people who have it.

And I’m incredibly grateful that he did not stop at the other EMG and the antibody tests and say “Well obviously you don’t have a problem here.”

My neurologist is very thorough. I honestly thought this test was just a formality to make sure he got everything out of the way. But no, it’s actually that I probably have myasthenia gravis or hereditary myasthenia or another neural junction disease.

I’d thought it very strange that I could have symptoms so like my mother’s and have it all turn out to be a completely different condition (adrenal insufficiency). Now he’s saying that the same drugs work for adrenal insufficiency that work for myasthenia gravis, so it’s possible the extreme effects I’m having from the steroids are because I’m treating two things at once. My mother gets extremely good effects from Prednisone, so there’s some precedent here.

I’m actually excited, I’m almost as excited as when they found the adrenal insufficiency. Because this is another test that is written in stone, you can’t deny that it exists. And the combination of adrenal insufficiency and myasthenia gravis is… so fucking staggering that I don’t actually understand why I’m alive, given the events of the past years.

So this news is huge to me. I don’t have a firm diagnosis yet, of course. We still have to do further testing. I’m going in for blood tests tomorrow before physical therapy. And I think he might still want to test me for mitochondrial disease, given that it can cause the whole array of problems I’ve had.

But… seriously… this is enormous. Every test that shows the way to a new, firm diagnosis of something big, is enormous. Because that’s one less thing any halfway reputable doctor can doubt about me. These are not tests you can fake. I have gastroparesis, I have adrenal insufficiency, and I have some as-yet-undiagnosed neural junction disease. And I’m absolutely happy and thrilled to be getting answers, finally, because I’m sick of almost dying and nobody knowing why.