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About MTRJ75

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  1. Yes I get this if I'm on my feet too long. I often get it when I sit back down from being up for more than just a few minutes often. It's mostly like a chest tremble, but can feel like a shakiness or weakness in other areas as well. If this is the same thing you're dealing with, I don't believe it's heart related since nothing comes back on cardiac testing. Unfortunately, doctors haven't been able to tell the reason for it yet.
  2. Wasn't really clear, but this is the type of thing I meant by "misdiagnosed". I'm not sure how to react to this. While I hate to say it's good news that this happened to him, it is a positive he was surrounded by people and probably relieves a lot of us that it was not due to dysautonomia alone, although it's still a young age to have this type of event happen to someone who's taking care of themselves. Even though it turned out to be a blocked artery, I'm learning now that these things aren't only a result of too much pizza and beer. Inflammation, which is more chronic in a lot of us, increases cholesterol, which increases the risk of blockage. But it's still a relief that blind dysautonomia was not the cause of this. Thank you for looking into this further.
  3. Thank God he's okay, but this is a bit confusing. The article ends with him saying how much of a positive it was to know what he had and that it's not fatal. But cardiac arrest sounds like it can be pretty fatal. Was he misdiagnosed or is this condition a lot more dangerous than we've been led to believe?
  4. IMO, most standard table salt probably is bad for you. Maybe not so much if you use a higher quality product (Himalayan Pink or Sea Salt).
  5. Had my normal 3 month trip to the eye doctor today, but since I said things had been a bit more difficult since the weather turned, he did a bit more than he usually does. The good news is that vision is still fine and nothing looked off to him, but he's never dilated me before today. It wasn't until I started driving the few blocks home that I realized that I was experiencing a slightly exaggerated version of the vision issues I've been trying to explain to everyone all along. It's nothing that I noticed looking in the mirror or anything, but my eyes must be dilating more than they're supposed to all along. Have the neurologist up Thursday and will bring it up with him next, although I don't know if there's anything he can do about it and it's probably not even one of my top priorities right now as long as there's no progressive damage going on.
  6. Conveniently, the first doctor on this list is the one I asked about in another thread last week. That seems to be an encouraging endorsement.
  7. This looks very interesting for those of us who have difficulty traveling.
  8. Thanks again. Don't mean to be nosy, but since it's going to be considerable effort with some help needed to get there, I'm hoping the result is not just things I've already done.
  9. Yes, I think I mentioned above the effects of starting the treadmill stress test where my heart rate decreased at first. I think it's standing still for periods of time that's a bigger issue sometimes.
  10. Thank you @Lily Good to hear some positive feedback. Have you improved a bit since seeing him?
  11. I guess frustration is an emotion, but really anything my body perceives as stressful (and it now perceives so many things as such). I don't know that there's often any sort of emotion attached. For instance, I had to lean over to write some stuff down while on the phone the other day and realized that the paper was wet because I was drenched in sweat just from the act of leaning forward and writing.
  12. I haven't been diagnosed with VVS, but have had the lack of speech thing a few times. For me, it's like my mind wants to say words and sounds come out of my mouth, just not in the form of words or at least not the words in my brain. Unfortunately, this was one of the symptoms that my family believed I may have been "selectively enhancing" and it felt so surreal that afterward I even questioned myself if it was real. I get the shakiness too. Internal tremors are one of my worst symptoms as a matter of fact and caused me to have to give up working out around a year and a half ago because the post-workout shakes got so bad. Now I can sometimes get the full effects of a workout (sweating, shaking) from a frustrating phone call. I'm wondering if you might want to experiment with some more friendly sugars (fruit?). The Coke especially probably isn't doing good things to your body.
  13. Even though I now have great difficulty traveling, I'm at the point where I really need a specialist at this point. Here and on the Dysautonomia Int site, there's only one Dr who shows up in the entire state. Is anyone else from the area and does anyone have any experience with Dr Tullo?
  14. Some genius person has to be able to figure out how to do this by laser or something eventually, so we can take these treatments as often as necessary...but probably not until or IF the demand is high enough unfortunately. I know that might sound ridiculous now, but medicine and technology are currently doing things we probably thought impossible not too long ago.
  15. When I was first semi-diagnosed, I was in the cardiologist's office, all hooked up for my stress test. She walked in the door, I stood up and she saw I immediately went to 130 bpm and realized something was wrong. I thought that was it, we're done here and sat back down. She said "What are you doing? Let's go. Get on the treadmill." Odd thing is I don't even think my heart rate increased any more and even went down a bit for a second or two at first. This was about a year and a half ago and growing issues have kept me from being able to exercise at all anymore, but the elevated heart rate alone didn't stop the cardiologist from making me run and she sent me right home afterward too, so she didn't seem to be immediately concerned.
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