I did it! I met the wizard- he came in the form of a Dysautonomia specialist at MUSC. (see here for more details)He met with me for almost a full hour. He explained how picky he is being choosing patients so he can do the most good. I felt lucky to be pat of the “unlucky’- sick enough to see him.
We talked about my symptoms- I was glad to have organized all of them ahead of time. We also discussed previous diagnoses as well as previous testing, like my tilt table test in 2014. He seemed to know what I was going to say before I said it, especially in regard to symptoms.
Then came the next steps: a skin biopsy for small fiber neuropathy, medication review and management, as well as a focused exercise plan to build up standing tolerance. All of this seemed to “click” with me as the wizard said it, especially the idea of small fiber neuropathy vs. dysautonomia.
I have never heard of small fiber neuropathy before but it, not dysautonomia may be my culprit. It causes several issues with touch, temperature, pain, and even some bladder issues. All of this made sense.
Regardless, he plans to do a full round of dysautonomia testing once he finishes building his “lab.” In the meantime, I’m to focus on my blood pressure, keeping a log as well as raising the threshold for medications(keeping my blood pressure a little higher than normal so that when I stand up, it doesn’t bottom out). Reintroducing some salt into my diet to keep me from bottoming out and beginning a focused cardio exercise plan that gradually introduces standing exercises.
It’s a lot of work on my end, but I’ve never stayed away from hard work, and believe I’ve had the power all along, like Dorothy. Now I have learned that the Wizard isn’t just a guy making smoke behind a curtain, but a real human that has done his “homework” of sorts on the puzzling condition of Dysautonomia.
Oh! and the best part is that the Wizard is willing to do virtual visits as much as possible, which is very exciting for me. As much as I love traveling in Cinderella’s Coach, I like not spending the money or the time to travel to Charleston.
“You’ve always had the power, my dear, you just had to learn it for yourself.” — Glinda
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