My cheerleading section on Twitter (thank you!) already has a fair bit of this, but putting it all in one place. The upside is at the bottom of the post
Since the last post, I finally found out what the relevant specialty is. The less-than-ideal part is that it’s neurology. The initial diagnostic procedures were actually fairly clear-cut. There are not many conditions that cause the specific pattern of dysfunction that I show (and, thanks above, ALS does not seem to be among them — that was the terror).
The most likely cause — i.e., the neurologist’s best guess — is a fairly rare, chronic, treatable condition. Caught early enough, the treatment has the potential to restore and maintain what was the patient’s baseline function. Or it might not. No way to tell until we’re into it.
Now, the insurance company gets involved. The definitive test for this condition is very expensive DNA testing, and they won’t pay on just any neurologist’s say-so. I’ve been referred up the chain of subspecialists to somebody very well qualified who’s based about 90 minutes away. Unfortunately, I can’t see him until the end of June. Further unfortunately, the treatments are even more expensive than the testing, and probably would be needed for life, so insurance isn’t going to touch them on speculation.
So the best-case scenario, among the reasonably likely ones, is this: The subspecialist re-affirms the need for the DNA testing. Then the DNA testing takes several weeks to come in, as all DNA labs are chronically backed up. Then the diagnosis is confirmed. Then insurance approves the treatments. Then the treatments begin (which could be done locally). Then the treatments kick in. Then I find out how restorative they are. In other words, September or October to feel better, at best.
Meanwhile, I’m effectively physically disabled. Going downstairs is taxing. Showering is taxing. Driving is verboten. Non-medical traveling, likewise, pretty much. Going out for dinner is exhausting, feeling it into the next day. Going to the office and accomplishing anything is pretty much out of the question (I can still telecommute, fortunately, though at a reduced load — I have about 3-5 hours in a given day of sufficient cognitive clarity before the exhaustion kicks in). I had a four-hour cardiac workup yesterday, just in case, and had to write off both yesterday and today for it. And my health might decline further in these months of waiting. Hey, at least I’ve got the parking permit.
Now the upside. I’m coming to terms with the fact that I will be disabled for at least several months. With the next appointment nearly two months away, I have to. So my perspective is gradually shifting (with nudges from both my conscious intent and Jalan’s help). I’ve been giving a lot of thought to what I want my life to look like for the near future, moving away from focusing on what it can no longer look like. Among other things, I haven’t written anything down yet on this vision as the ideas churn, but I’m coping. And accommodating.