My Doctor Called

Ok, my doctor called while we were at the pool today, so it was kind of an unexpected time for his phone call. He said the tests for the GAD antibodies and for the Voltage-Gate Potassium Channels (VGKC) antibodies both came back negative. So, good. More diseases we've eliminated. The problem is that he ordered a third test, for Amphysine antibodies. That test got lost in the runaround because no one knew where to send it to. Apparently even the Mayo Clinic doesn't do that test. So now my doctor and his staff are trying to find someone in the country who can do that test, then I'll go give them more blood again. Another 4 hours checking into the hospital just for a blood draw, and another at least two weeks waiting for test results.

The worst part is that I really don't think this one will be positive either. From what I've read on the internet, it looks like that test is for some disease in which you get stronger the more you try to move a muscle. I'm the opposite, getting weaker the longer I use a muscle. So, I don't think we're going down a very good path here. But what other paths are there? Are there any other paths? Maybe I should just get used to no diagnosis.

I've been thinking about FDR. He thought he had polio, but scientists now are looking at his symptoms and think he probably had Guillan-Barre' syndrome instead. There are a few differences, but his life was the same either way, with polio or with GB. There was no test when he was alive to identify what he had. When I first heard about this, I was shocked, thinking: "How could he go through his whole life thinking he had some disease he didn't have?" But now I'm thinking: "Maybe it doesn't matter what it's called. Having a more accurate diagnosis wouldn't have changed his life at all. Neither was treatable during his lifetime."

For me, maybe it won't matter what my diagnosis is either. Nothing that it could possibly be has any treatment or cure. So knowing probably won't change anything. Except maybe it would help when people ask "What happened to you?" Right now I keep getting tempted to answer: "Nothing. Nothing happened to me. I'm just living my life day by day, and I don't know why I can't walk." Of course, I'm sorry to all of my sweet friends and loving family when I don't have an answer for you. I've tried. I've taken many tests, and have been patient waiting for weeks between each of them. And I'm still taking them. But maybe there won't be an answer that we can find. Maybe whatever's wrong with me won't be discovered and diagnosable for another 100 years.