Inspirational song: Keep Yourself Alive (Queen)
It shouldn’t be this hard to get medical care. I’ve done the rounds of four different doctors, since I identified the symptoms almost a year ago. A month ago I got a diagnosis, from the highest tier specialist I’d seen. And now, as of today, I have spoken with three of the four docs about getting the prescription recommended for what I have. I still have nothing to show for it. The best I can say is that I’m incrementally closer. I showed my rheumatologist the printout from the Anschutz neurologist who diagnosed but passed me off to my regular neurologist. I told her how the regular doctor shut me down with “I don’t treat that.” I conveyed my suspension that this neurological disorder might be as controversial as fibromyalgia, in that some doctors don’t accept it as real. That’s the vibe I got from the last doctor visit, anyway. And I told my rheumatologist that I was at my wits end.
I feared I’d be turned away this time too. She doesn’t deal with this either, but she did listen to me, and she seemed sympathetic to my dilemma. She said straight up that she has never prescribed the recommended drug, and has to do more research to know how to dose, and whether to do it at all. She looked for side effects and whether it would react poorly with lupus. But until she gets the notes from the two neurologists, she isn’t going to act. On my way out of her office, she asked for permission to discuss my case with one more neurologist, at home, over dinner. I enthusiastically granted it.
In the meantime, the little muscle spasms/micro seizures are getting worse. They hurt more and last longer. Once the sun goes down, the frequency of them goes up. I don’t want to wait until next week for the doctors notes to reach her, but I have no choice. It sure would be nice to break free of this electric chair that I’ve been permanently attached to for a year.
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