Robyn, Thanks so much for getting back to me. I have written a synapses of my history & associated symptoms. Apologize for length. I have a long complicated medical history.
1. I applied to the Mayo Clinic in Rochester, Minnesota 2010, 2013 & sometime after 2016 when I stopped working.
2. Symptoms: In 20’s developed GI pain, so severe GI specialist put me on elavil. Had GI pain & severe GI motility issues on & off since college, esp. since 2013 through now.
2000- after Flu severe chronic pain & pressure headaches in late 2000 early 2001. Took 2 years to control. Also had odd feelings on left side of my body, (start of my neuropathy?).
2006- Chronic headache back, In patient DHE treatment again at TJU.
2007 Fall -Start Entire Body pain. Diagnosed-Fibromyalgia by family Dr & Neurologist. Tried different SSRI’s and increasing elavil & other tricyclics, not much help. Rheumo. started tramadol. Different treatments Fibro Treatment Center, no help. RX’s from Family Dr, Neuro & Headache Neuro. ER Tramadol most helpful body pain.
2009 Body Pain worse again, tried other RX’s like cymbalta, no help. Increased tramadol helped.
2009 treatment in pain management program, including aggressive PT. Started on low dose Gabapentin, did not help. Tramadol only thing helping pain.
2012-2013, more severe GI problems with upper right quad other stomach pain as well as nausea. GI Dr tested found delayed Stomach emptying & delayed intestinal motility.
2013 Brain fog starts, worse now
2014 I had suffered with episodes of feeling faint and rapid heart rate (HR) on & off since my 30’s. Few ER trips no findings. Episodes more frequent since 2014 .
2015 After heart rate, blood pressure, feel pass out several times diagnosed with Pots & Disautonomia by a Dr who was the only Dr In my area who was Familiar with these syndromes. Family Dr. recently familiar with diagnosis’s.
2015 Neuropathy/Severe burning pain started in my feet and hands, now it’s more pronounced throughout my entire body.

2016 Had 2 tilt table tests for Pots. 2016 showed nothing, 2019 test Positive for Pots.
2016, Due to Pots, Disautonomia and severe body pain I had to go out on LTDisability. My symptoms have been getting worse ever since.
In 2017, higher dose GABA. Helps.
2019 New Neuro Dr found moderate to severe Small Fiber Neuropathy after skin biopsy.

I am on many RXs including Gabapentin, Tramadol, Cymbalta (higher dose now helps), Nadol, mididrine and others.

I hope to be seen by Mayo so that the group that is multidisciplinary or anyone there can take a look at my overall symptoms and different medical issues throughout body & find cause of Overall Disautonomia. Biggest concern is my Neurological deterioration.

Sorry so long, hope info helpful.
Thank you, Liz

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