Oh, freedom. I felt like I was sixteen and taking Mother's car out for the first time.
So I wrote the above on Friday evening. It's Tuesday.
I got a call last Weds to say that as I was on the cancellation list for the neurologist and there was a cancellation, would I like to come on on Thursday? WHY YES I WOULD!
Would you like a list of my current diagnoses? Here you go:
Small fiber myopathy
(Not sure if I have the diagnosis of Postural orthostatic tachycardia syndrome or not. Have emailed.)
The only diagnoses that matter are MAYBE the top two. Afib doesn't matter as they won't treat me with blood thinners. So really only my primary diagnosis matters. If I have POTS, that matters, too.
(For those of you reading unfamiliar with my health issues, I have a high heart rate, low blood pressure, and my body can't regulate my BP correctly. My pressure drops out and I faint to reset everything. Complicating things were two pulmonary emboli found about a year ago, causing heart and lung damage.)
Everything else is really just saying "yeah, your autonomic nervous system doesn't work right." The first diagnosis already says that. It's just a bunch of noise that tells me "dude, that sucks. Your vagus nerve is so shitty."
So now I have a new med to take. Metoprolol, which is a beta-blocker. This was the last med class to try, and it was put off since it lowers blood pressure. I take three meds to raise my blood pressure, so this wasn't something they were excited about putting me on. However, since my BP is low, it won't have the same lowering effect that it has on someone with high blood pressure. So far, this is accurate. My BP is a bit lower than it normally is, but without all of the side effects and symptoms of a natural drop. The point of this med is to allow more efficient blood pumping and to lower my WAY TOO HIGH heart rate. My high heart rate is what makes me think that POTS might be a thing.
The other recommended treatment is for daily IVs of saline. Allow me to repeat that in caps: DAILY SALINE IVs. To have a nurse come to my home and administer an IV every day. My cardiologist had given me the heads up that this was going to be suggested, and that he didn't feel it was a necessary action, as long as I'm able to continue drinking fuckloads of water and keep my sodium up. I said that to neuro, and he was fine with it, but we agreed that we'll discuss it if the metoprolol doesn't work. I think that if my treatment becomes that extreme, I'll have to be on disability. I can't work that into a work day and keep my job.
There's a specialist in Boston he'd like me to see the next time I go home.
I didn't hear any answers I wanted except for "I'm comfortable with you driving."