Soooo, yesterday was my appointment at Stanford Neurology. It felt like I was never going to make it there both because my health just kept getting in the way and traffic in the Bay Area is a complete shit show wrapped in a train wreck. A typical 1 hr 20 min drive became a 2 hr 35 min drive. Can you say “streeeeeess!” I hustled my ass up to 3rd floor way faster than my body wanted me to go, got to the appointment 20 minutes late, but by the grace of whatever forces are at play in the universe, my neurology PA saw me anyway. Thank the baby Jesus!! I’m so glad my exertion was not for nothing.
The appointment went really well. Nothing earth shattering, but we had excellent dialogue, which if you’ve been playing the healthcare game at all, you know that’s hard to come by. She listened to all of my concerns, agreed with many of my assessments, and actually took my thoughts and feelings into account when figuring out how to proceed. Honestly, sometimes validation is the best medicine.
We talked about everything and determined that my thyroid is most likely the culprit behind why everything has gone sideways. We also agreed that I’ve likely been hyperthyroid (overmedicated) for quite a long time, so even though my numbers look fine on my new, lower dose of Levoxyl, my body is fried & can’t fight anymore. Basically the episodes I’m having are dysautonomia coupled with hyperthyroid episodes. That’s why they’re so violent.
She did a neuro exam which was pretty much normal with the exception of some balance issues and noted overactive/exaggerated reflexes (hyperreflexia) on my left side in my left bicep, left brachioradialis, and left patella. Interesting because all of my difficulties have been left-sided from the get go. It could be the result of hyperthyroidism. It could be spinal cord compression. Could be a slew of other things. Not sure at this point, but I’m going to have it looked into further.
After all was said and done, the game plan is to monitor my thyroid very closely over an extended period of time while my hormone levels adjust (TSH, T4, T3), keep monitoring my BP and HR for a few weeks, add a beta blocker if need be to help control my heart rate/BP/irregular heartbeats/adrenaline rushes, take Ativan for bad episodes if necessary, eat really well, gain some weight back (my PA is the second medical professional to tell me I look malnourished 👀), stay well hydrated, discontinue salt pills, and assemble a team of local specialists to deal with all my issues locally. That way I have help close by and can be monitored on the regular. Not excited about the hunt for good doctors that’s about to ensue. “Good” being the key term there.
There’s a bunch of tests I need to do for things I inquired about that she thought were a good idea as well. First on the list is blood work tomorrow for my thyroid to get a solid baseline of where I’m starting out along with some kidney labs. Then I’m off to see an orthopedic surgeon/spine specialist about the weakness and hyperreflexia to rule out spinal cord involvement. Other tests include imaging, nerve testing, GI testing, and the list goes on. I’ll be getting those scheduled soon. In the meantime, I remain optimistic and determined. I just need to try to rest (though insomnia is an annoying little asshole), nourish myself, and give my body time to adjust. Unfortunately, patience is not a virtue I have the luxury of possessing these days, so this is gonna suck.
That’s all for now peeps. I’m sure I’ve missed stuff. I’ll keep updating as I think of things.
At this moment, I’m hoping the sleep fairies throw a bitch a bone. G’night.