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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, they are busy busy busy. I think that they will be more likely to follow up on things they think they can actually fix. And two, there were a lot of young residents. I think that POTS and other similar problems are gaining more interest and the available manpower to actually have follow up care will improve through time.
  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 and sat down in a crowded waiting room. I was the youngest person there by about 30 years. Most of the people in the clinic looked to be in their 60’s or 70’s. The people next to me were complaining about millennials and how “their generation was so much better because their parents beat them”. Yes, they actually said that. Yes, I started laughing. No, they didn’t appreciate me laughing. I waited for about 30-40 minutes. I had shown up early, so I wasn’t surprised. My first appointment was for autonomic testing. I went back to a room where I lied down on a table, had a bunch of electrodes connected to my chest, and then did a heavy breathing test, a valsava test, and a tilt table test. Thankfully it was only a 10-minute tilt, so I didn’t get particularly sick. All of this took about an hour. After this, I was ushered back out into the waiting room to wait for my appointment with the doctor. All of the complaining baby boomers were gone at this point and were replaced by happier retirees. The doctor was pleasant. I could tell that he was stressed. People came into the room to ask him questions more than once, and he had to step outside halfway through to deal with something. Having had many doctors at this point, and being a researcher myself, I saw this for the stressful busyness that it was, not rudeness. I felt as though a lot of the people there were stressed. The doctor started by asking me about my “story”. How did I get here, what made me start going to a doctor. Most POTS patients have had a long history of bouncing around to different doctors. So had I. After reviewing the various doctors I had seen over the years, we went over my symptoms. Before I came, I had printed out a list of my symptoms that I had made through time. I included a few pictures as well. This was very helpful, since it’s easy to get flustered and forget to mention or remember certain things, even if they affect your daily life. He started looking at my joints, noting that some of them were hypermobile and I had symptoms of joint hypermobility spectrum disorder. He eventually said that I didn’t seem to be quite at the Ehlers Danlos side of the spectrum, but that he wanted me to see a geneticist. I will have to return for that visit in the near future. After looking through my symptoms and talking with me, he was also concerned that I might have mast cell activation syndrome. They did two tests, a blood test for serum tryptase and a 24-hr n-methylhistamine analysis. My serum tryptase came back normal within 48 hours, but the 24-hr n-methylhistamine test will take a few weeks to return since it had to be sent to the Mayo clinic. After the clinical visit, I participated in a 24 hour research study. This involved me being hooked up to an EKG halter. My rate was monitored continuously and my blood pressure was taken every 30 minutes. The room that I was put in overnight was large. I was told that it was actually designed as an emergency contagious disease (think Ebola) room that could be completely destroyed afterwards. There was a bed, a few recliner chairs, a table and a tv. I was fed a hospital dinner, having not eaten for 24 hours. I don’t know if I was just starving but the food actually wasn’t that bad. Much better than I had expected. I had planned on spending the evening using my laptop, but I felt rather unwell after the stress of travelling and being off my medications so I ended up going to sleep very early. The next morning involved tests while laying, sitting, and standing, while my heart rate and blood pressure were taken at short intervals. I was able to stand for 25 minutes before I started dry-heaving and almost lost all hearing, I was going to black out. They quickly laid me back down but I was already drenched in sweat and continued to feel nauseated for hours. This was certainly the worst that I felt the entire time I was there. Around lunch we went upstairs to do another round of research autonomic testing. It was relatively similar to the testing done the previous day, with a few extras including putting my hand in an ice-bath and having me breath in this bag of inert gases and then measuring my breathing output. Finally, they gave me IV doses of short lived medications to test my heart and blood pressure responses to them. This part took about an hour. I think I actually may have fallen asleep at one point, since I was pretty exhausted. It wasn’t painful or particularly uncomfortable. The very last dose gave me a short tingly flush and that was it. They were very sure to indicate that I could stop participating at any time. Afterwards, I went back downstairs for about half an hour and then I was free to go. Rather than trying to fly out immediately, I had booked a flight for the next day, so I went back to the same hotel for another night. I had dinner at a local restaurant called Fido’s. It was pretty good, but I was feeling so nauseated that I only at half of it. The next morning, I had breakfast at the hotel and had the same problem. It took 3-4 days before my stomach settled back down. My arm felt like it had been on the losing end of a wrestling match for a few days. Other than a delay, my flight home was equally uneventful as the one there. By the time I got home, some of my test results had already started posting on Vanderbilt’s online portal, although we had already discussed them in person. I took a few ‘surveys’ given to me by the research team asking about how I rate my symptoms and day-to-day activities. I will have to go back, but I’m not sure when that will be just yet. I’m waiting to hear back from the geneticist. And of course the MCAS results. Overall, I was happy that I was able to go. They were obviously quite knowledgeable about POTS and also other disorders that can be associated with POTS. Everyone was friendly, although stressed. The facilities were nice, and I did feel as though I was being listened to and taken seriously.
  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 any advice. I attached a picture of my hand since I can't really convey what's happening. It's almost like an allergic reaction to moving. Any suggestions?
  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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