So as you know, I have been seeing an out-of-state Autonomic specialist in Virginia. Well, per my last visit on November 18th, I am now being referred out-of-state yet again to either Vanderbilt University’s Autonomic Dysfunction Clinic or Cleveland Clinic’s Neuromuscular Center. Vanderbilt is located in Tennessee and Cleveland Clinic is located in Ohio. Cleveland Clinic has a much quicker review process of seven to ten days. Whereas, Vanderbilt has a review process of three to six months which could ultimately end in denial to their clinic. The specialist I was seeing in Virginia has a fantastic autonomic lab, but he unfortunately does not have the bandwidth nor the ability to test me for various diseases that could be contributing to my POTS. I wish I would have known this sooner, but I did receive extensive autonomic testing that I will take with me as I move onward to the next set of specialists.
September through November were my absolute worst months so far since the onset of my POTS in April 2018. Doctors have told me that whatever is going on is “flaring,” and my question to that is, “What exactly is ‘flaring’?” On top of feeling lousy, I can’t help but worry about the upcoming date of January 1st, as it marks a brand new deductible and out-of-pocket expense limits 😦
On December 13th, I am set to get a Small Fiber Neuropathy (SFN) biopsy done. Small fiber neuropathy is a disorder of the small sensory cutaneous nerves which is seen quite frequently in POTS patients, as well as with many people with autoimmune disorders. Some symptoms of SFN are burning, tingling, prickling, short bursts of pain, and loss of sensation.
Here’s some more information about SFN if you’re interested in reading about it: https://www.healthline.com/health/small-fiber-neuropathy
I am hoping to hear back from Cleveland Clinic in the next couple of weeks. I am crossing my fingers and toes that I actually get accepted for an appointment which will hopefully result in better understanding and more treatment options.
As always, thank you for your support and for reading my blog updates ❤ Until the next post!