I saw the new neurologist yesterday. I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area. Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here. Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.
Crap.
I liked him.
This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice. He’s trying to do it right. He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.
So what’s new from the appointment? Other than “Good bye new neurologist?” My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies. That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy. Then what is still on the table, Mr. Patient asked my soon to be former neurologist. The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable. Well, better the devil I know, so I’m going with Ehlers-Danlos.
One interesting thing that did come of this appointment. Sleep. I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it: I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep. My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing. “Oh I can get you those” I say. “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat. I doubt it’s gonna help that.” Turns out that I am very wrong about this. I should have realized, I don’t sweat. Unless I’m passing out. That should’ve been a clue that the waking up in sweat was something other than being overheated. My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing): when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating). There’s also evidence that it can contribute to the development of cardiac arrhythmia. Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason? Oooh, oooh, me! I did.
Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep. I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too. I.e. bad one makes for bad other, although which one comes first is up for grabs. But maybe fixing the sleep could help with some of the autonomic function. Gosh that’d be swell.
Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.
Final Trick 
