I am no longer undiagnosed. On Thursday, I found the missing “puzzle piece.”
A neurologist has been tracking my case for 2 years, trying to determine if my autonomic neuropathy/failure is immune based or genetic. It turns out it’s genetic, which means he can only treat the symptoms and not the source.
He thinks my case shouldn’t necessarily progress, but it will likely fluctuate and come in severe cycles (which could kill me or leave me severely disabled). So it’s about improving my quality of life and hoping for the best.
He started me on a new med to help control some of the paresthesia, which has become a major issue. It’s making me feel like a bit of a zombie, so I’ve been depressed and numb for the past few days.
I’m glad I get the chance to process and grieve a little bit, but I also have to let go of the hope that this was going to get better. Or that there would be an action plan.
Sending love to everyone, hopefully I’ll be back to my peppy self soon enough. ❤️