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About Canadiangirl73

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  1. I have also been struggling with intermittent dysphagia and tremors. I actually have a prescription for a liquid meal substitute when I'm going through a phase when I have a really difficult time swallowing anything, even fluids...
  2. Thank you all for your kind words. Badhbt: I was screened for Lyme and Chagas and had the usual ANA panel in addition to test to r/o amyloidosis and sarcoidosis. All negative. They suspect a blockage because of my sx presentation and history of elevated cholesterol in the past whilst on the BCP, but are reluctant to take the leap and do an angiogram or PET (so am I, mind you) because they're afraid I will pass (given my history of arrhythmias and dysautonomia). My GP yesterday told me: "Better to have you alive and very symptomatic than dead. If we do nothing, then there's no harm done." Trans
  3. Sorry you're going through this. What other tests has your cardiologist conducted? An echo could shed light on minimal HRV.
  4. Thanks Alex for the article. I will read it. Strangely though, I had heart failure that coincided with my dysautonomia onset. I always said if I had not had that very transient heart failure, I probably wouldn't have this today! But when I told docs, I only got a glazed over look, as usual.
  5. 40 now, two months shy of 38 at onset.
  6. I'm sorry you are going through this. I am also experiencing the same thing. I saw the so-called best autonomic specialist in Canada and he didn't know what to do with me. My GP told me the same thing this morning. She told me I was a medical mystery, would most likely never find out the route cause of my autonomic dysfunction, that I should accept that fact and further testing was unwarranted. I feel like I exhausted all avenues in my country and might have to go abroad to get answers. I empathize. Hang in there!
  7. Hello all, Since I last posted seeking advice on whether to choose a PET scan over an angiogram, I saw my cardiologist and my GP. Both appointments were utterly disappointing, leaving me sad, frustrated and wondering what I should do next. If anyone knows where and to whom I should turn based on the following, please share!!!! So back in April, I had an echo. Perfectly normal. Stress echo in June: unremarkable aside from reduced stroke volume after exercise and quick raise in HR. Cardiac MRI in early July: mild global hypokinesis of left ventricle (meaning muscle not as energetic as normal) bu
  8. My cardio wants me to undergo a test to rule out blockages. I had a stress echo back in June but it was inconclusive given my quick HR increase. I posted about it a while back: http://forums.dinet.org/index.php?/topic/23821-stress-echo-showed-reduced-stroke-volume-after-exercise-what-do-you-think/?hl=%2Breduced+%2Bstroke
  9. Hello all, I am in need of advice before my appointment with my not-so-nice cardiologist this Thursday. Last week, I tried to undergo for the third time a CT angiogram to no avail. This time though, my HR and my BP were co-operative. My BP was well above 100/70 and my HR was in the 50s. They could have easily done the test but given their poor understanding of dysautonomia, they said my HR would go up when I was to transfer on the CT table and was given the iodine contrast, and they were afraid it would stay elevated for the test in spite of my insisting it would go back down very quickly. Bot
  10. Woohoo! Hope this works well for you and you see lots of improvement!
  11. As others suggested, you could scoot on your bum each step at a time. That's what I used to do when I couldn't do stairs in an upright position. As for showers go, I started with a bath chair but had way too much pooling in my legs, so I had a handheld shower installed, one with a long hose, so I can sit down in the tub with my knees under my chin to prevent pooling.
  12. I agree with what others have said. Increasing our leg muscle mass is paramount in order to push blood back up. When I was in cardiac rehab (and they had no experience in dealing with a dysautonomia patient), they put me on the treadmill, the recumbent bike, etc. and expected me to perform for a set number of minutes. I quit the program and did exercises myself (albeit suggested by a physiotherapist) to strengthten my leg muscles at my own pace. It took a bit of time, but I went from being semi-bedridden to quite functional. My HR still shoots up by at least 50 beats when I stand, but goes fro
  13. Thank you all for your replies. Since I posted this, I really paid attention as to under which circumstances this burning feeling sneaks up on me. Turns out it is only when I've been upright for a while and it resolves after some time when I lie down (one hour or more). I guess it is a form of shortness of breath. I don't hyperventilate but breathe normally, so I can only assume maybe it stems from lack of oxygen or blood to the lungs... As far as acid reflux goes, I get it from time to time in addition to a whole lot of GI issues. However, when I do get reflux, it is a constant thing made wor
  14. Hi all, I haven't been here for a while as I have been busy with my two young children while school is out and had reached some sort of plateau as far as symptoms went. Well, I've been having a relapse for past few weeks, but more so for the past two. One new symptom (never had this in past 2+ years since I've been diagnosed with dysautonomia) that's been pestering me lately is this feeling in my throat and lungs one gets after running in the cold or running for a long time, you know, that burning feeling. I just got off the phone with my cardio's nurse who served me the "it must be anxiety" a
  15. I remember reading a study in which they said active standing was actually better because the patient uses leg muscles to trigger venous return and you actually had a better idea of what was wrong. On a TTT, those muscles aren't used so even a "normal" person would have a higher increase in HR. I can't find the study but will post it if I come across it again.
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