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sjoh197

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About sjoh197

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  1. I didn't have a blood volume test, I don't think. Although I had such a barrage of testing, that it was hard to actually keep track. I had already had autonomic testing before coming here, and have had multiple prescriptions to treat symptoms for years, mostly pieced together by neurologists and pain management docs. They changed my beta blocker to methyldopa because they were concerned about the mast cell thing. I think they are waiting on that to make any other decisions.
  2. The clinical visit and testing was covered by my insurance. My overnight hospital stay and testing was covered by Vandy, since it was for research. I can't say for sure, since I've never been before, but I felt that participating in the research gave them a more vested interest in me, but also gave me more time to talk with them and learn things than a simple clinic visit would. Also, since I have to return for the geneticist and an orthopedic specialist, the dr. wants me to come back for a follow up. I had read that they aren't big on follow ups, but after going, I see two things... One
  3. I waited six months to go to Vanderbilt. My flight to Nashville was uneventful. I was able to get an aisle seat which I prefer, since my legs often ache on planes and it’s nice to be able to stretch them into the aisle a few times. When I landed I took an Uber to a hotel right next to the stadium at Vanderbilt. The close proximity of the hotel to the med center was incredibly helpful. The next morning, I wasn’t allowed to eat before testing and the coffee and breakfast downstairs at the hotel smelled particularly good. I grabbed my bags and headed to the heart and vascular clinic. I checked in
  4. I have POTS and have had terrible swelling for the past 2ish years and it is really starting to get in the way of my work, my day-to-day, things that involve my hands, or walking. The only time the swelling goes down is when I sleep. My hands also get pink and shiny where they are swelling. They used to have a neuropathic itch when they would swell, but I think my gabapentin made that go away. My feet and legs also really swell, and feel heavy and push against my shoes. I don't really know what to do. I have an appointment with Vanderbilt in May, but figured I'd see if people here have a
  5. I am new to the forum and came to ask about a symptom I have that I don't see mentioned often. On a regular, almost daily basis, my arms, legs, and sometimes just toes will feel a major discomfort that I can only compare to the uncomfortable feeling that you get when you have a blood pressure cuff on and it's really tight. Not the actual pressure part, just the uncomfortable "arm below the cuff" part that feels like it's being strangled and has a noticeable pulse. Does anyone else get this?
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