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MTRJ75

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  1. Thanks @PistolI got a lot of that too from my reading, but it sounded that the way they explained it was the above may only apply in the context of Diabetic CAN. I can't find anything about mortality or treatment for other AI caused CAN. My neurologist uses Autonomic Neuropathy and Autonomic Dysfunction almost interchangeably, though I know they're not the same thing. Is this something I need to pursue a bit more aggressively with doctors? This has always been my chief concern with this constant chest discomfort. Though I can't explain the feeling, I know my heart beats differently than
  2. I'm continuing to roll through these with the neuropathy talk this weekend. I'm a bit confused about one of his more controversial points during the presentation. He said that diabetic cardiac autonomic neuropathy led to worse outcomes than other types of autonomic neuropathy without underlying disease. Even after later clarifying, I don't know that he differentiated between different types of AI caused autonomic neuropathy. For instance, if my Sjogren's is the cause of autonomic neuropathy, is that the same thing? Because every time I've tried to research cardiac autonomic neuropa
  3. A couple of months after my first hearing in November, I got a notice of a second hearing. My lawyer said that this is unconventional, but better than a denial. He had also learned that the medical expert they wanted to bring in was psychiatric. My initial reaction was frustration, but it turned out be the turning point in the case, I believe. The judge questioned the medical expert about something one of the doctors I'd seen (I don't know which one) had put in my records about a somatoform disorder. I got extremely lucky that this psychiatric expert actually understood the condition. He
  4. Thanks. It's weird that you had worse symptoms after the 1st shot than the second, but maybe that's better off. I think I'm still struggling with some of the after effects. My nervous system lit up with twitching and jerking and burning and pins and needles all night last night too. The heart rate is slowly starting to come back down though.
  5. First Moderna yesterday. It was funny because when the woman who did my shot told me about possible symptoms in the next day or so, I told her I walked in feeling like that. Aside from the expected soreness and increased tiredness, my heart rate has been elevated a bit more (10-15 bpm) when lying down, though that seems to be improving today. My oxygen was a bit lower than usual (91-93 lying down). And today, I've been having some issues with my right hand cramping, locking up and some twitching (even though the shot was in the left arm).
  6. I swear I just came across this product (or something like it) from some other source I can't remember a few days ago. I've been taking the H1 (Clarinex) for a month now and the H2 (Pepcid) for a week to no real benefit yet and was looking to add a stabilizer. Good to know this has worked well.
  7. Thanks all. I'm considering breaking the pills in half.
  8. Finally got the insurance company to cover. Cardiologist is shocked. The prescription is for 5 mg 2x daily. Is that the common dose for most who are on it or is it less? Asking because I know lower doses of Propanolol seem to be more effective in POTs than normal sized doses.
  9. Good to know. I wonder about side effects in those of us with AI conditions who aren't on any immune modifying medications though.
  10. I don't have an answer to your questions, but my mother worked for chiropractors from 1985 to 2015. I've regularly gone to several of them (though none since the pandemic). A good chiropractor can make a big difference, especially to those of us who aren't able to regularly move our own bodies as much as we want. And yes, most benefits I get from them are temporary because my body goes back to it's old habits. One reason may be the rubber band theory. The body will inevitably snap back to whatever condition it is used to.
  11. Ha, I'm shocked the ER doc didn't ascribe it all to anxiety and send you home with some xanax. I've always had chronic gastritis, dating back to well before my dysautonomia issues. More than 15 years. Just recently I've heard that this can have a mast cell cause as well. I should add that I believe whatever muscular instability I have in my throat/chest also feels like a factor. Very trembly, like an old car in the cold. Like things need to be tightened up. This feels like where the twitchiness or stuttering comes in and is the part that's responsible for most of my concern in coor
  12. I just watched Dr Chopra's presentation from the Dys Conf 2020 on Pain Management in Dysautonomia. I highly recommend if you have access. At the 20 min mark he goes into Mast Cell treatment. At the 40 min mark he goes into LDN, which is one of his favorite treatments.
  13. Thanks @peachychou123I believe it's a combination of digestive system (not necessarily immediately after eating/drinking, but not very long after each time) and thickened mucus (sjogren's) causing it. Thankfully I've gone a week without another episode. Now I just have to stop the anticipation.
  14. It seems like you're already getting some MCAS treatment even if the doctor doesn't buy into it. Again, someone else will probably know more than me, but I believe there are special compounding pharmacies for LDN. It still seems you're taking too large a dose and probably not exactly the same amount each day. As to that last part, I'm not sure what AI is responsible for in us, but perhaps AI issues are the cause of most of our issues.
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