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KiminOrlando

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Everything posted by KiminOrlando

  1. Every time I have anesthesia, I faint for the next week. There is nothing they have been able to do about it. I plan for it and have help come stay with me. Don't be surprised if your body reacts this way. Maybe you will get lucky and you won't, but prepare for a flare.
  2. I was approved 15 years ago, but based on my autoimmune disease, mostly. At the time, dysautonomia was not really recognized. Hoping someone who was approved more recently on dysautonomia symptoms will look at their approval letter and answer your question. They have very specific criteria for the different diagnoses. This is the stuff your attorney will guide you through. They know how to bring out the right information. My hearing was scheduled, but my attorney wrote a motion for summary judgment asking for the judge to just look at the documents without needing to hear my testimony. The judge did and just approved me. I was relieved. It was a very stressful time. I wish you the very best of luck.
  3. I wasn't on meds for my test. My best advice is go in for the test and crash in their office. Don't be afraid. They do this for a living and they can document it. Bring someone with you to drive you home and plan to be out of commission for at least the rest of the day. They need to know what exactly happens. They need to know how bad it is. I started getting help when doctors started having to pick me up off their floor.
  4. I don't know, but my guess is the muscles getting reduced blood flow/O2, so they are sluggish.
  5. My Allergy and Immunologist dismissed Mast Cell issues for me because my tryptase levels were normal. This looks like so much data. What should I print and hand him for my next 10 minute appointment to see if I can get him to look further?
  6. I was just doing some reading that says vasoconstriction makes O2 readings lower. Do you have an O2 meter at home? If so, try the meter on your finger, then try it on your second toe (beside the big toe). Are the numbers different?
  7. I'm doing this now. Almost went to the ER last week. Do you have an autoimmune disease? I do, so I have Interstitial Lung Disease, but I don't think that is what is going on. The Pulmonologist does a Pulmonary Functions Test and a 6 minute walk test to check for O2. Walk test shows no problem. PFT shows that my lungs don't convert the O2 in air into my blood effectively. It was determined that supplemental O2 would not help me. I also have lung fibrosis and nodules from the autoimmune disease. They aren't sure why the conversion process is impacted. I was just on a med (Elavil) to suppress my sympathic nervous system and my resting O2 was dropping to 84 and below. I stopped the med and my O2 went back to 94. I'm starting to think this process is somehow linked to the autonomic nervous system maybe even the sympathetic nervous system and it randomly makes me short of breath and hypoxic. I will be discussing this with my Pulmonologist, Cardiologist, and Rheumatologist in November. When you learn more, please post about it. This is something that is pretty scary for me. My doctors really don't know what to do. They have been treating as if it is Rheumatoid-arthritis related, but after that med snafu, I really think my Dysautonomia specialist needs to be more involved or I also need a neurologist. It isn't a coincidence that my O2 tanked when that med was given.
  8. I went to four or five gastroenterologist before finding one willing to do this. None of the others thought I needed this test.
  9. The next step is typically a colonoscopy and endoscopy. They typically do a biopsy to rule out stuff, then you go for nuclear testing for gastroparesis. Basically, you eat scrambled eggs with some kind of additive that glows under their equipment. They take images for about 3 or 4 hours to see how long it takes fir the eggs to leave your stomach.
  10. My PCP is Jewish, so he has a special interest in this. I got VERY lucky.
  11. My primary care physician actually knew what this was when I first went to him. I was impressed. This is how I finally got on the road to diagnosis. I was negative for this, but he knew what it was. Hope this revelation helps you and your family.
  12. Is this the familial dysautonomia linked to people of Mediterranean descent or a different kind?
  13. Update... Elavil failed due to bad side effects. Back to the drawing board.
  14. I'm glad you are going to go to Vandy. It was a great experience for me. I hope they are able to help you too.
  15. I always get the flu shot. It makes me feel a little off for a couple of days but when I don't get the flu shot, I get a huge case of the flu that takes about 2 months to get over. It just makes sense for me.
  16. Yeah, my insurance didn't cover Northera either. Your doctor should be more proactive in helping you find a charitable organization to help pay for it or be open to alternative treatment. That is terrible.
  17. Gastroparesis is rare so they will rule out everything more common first. I don't know if insurance makes them because the gastroparesis test is more expensive or what. They did the same with me. I finally was tested for gastroparesis because I told my gastroenterologist that I was throwing up the spaghetti I had for dinner the next morning. Food was also coming up when I bent over. Hang in there. If it turns out that you have it, I hope your doctor will write you a script for Domperidone. It isn't FDA approved so it has to be compounded, but it changed my life. It is widely used overseas and in Canada. If that med ever fails me, my life will change drastically. I hope they find your problem quickly.
  18. It is common to not be allowed to change physicians within the same practice. You may need to switch practices. What med is your insurance company not willing to pay for? Is it because they don't pay for that med or because they don't pay for that med with your diagnosis code?
  19. This is a terrible symptom and one of the reasons I don't think I could be employed. I have not found a solution. None of my doctors will write any scripts for this. I hope you find a solution.
  20. I take 1 mg sodium chloride pills every day. Aside from the occasional heartburn, I think they help.
  21. My potassium is normal although I do take prescription potassium and my magnesium is normal. I take 1 mg of salt daily and eat salt in everything. No progress so far. Everybody seems to be confused. I have been on 5 mg of prednisone for about 6 months and I can't help but think that is somehow involved because of adrenals.
  22. They did and it was acceptable levels.
  23. Be sure to tell your doctor. Autoimmune diseases go hand in hand with dysautonomia. It could be that, but doesn't have to be. I have Rheumatoid-arthritis and Lupus. They call it Undifferentiated Connective Tissue disease or Mixed Connective Tissue disease.
  24. @UnaOwenAn antianxiety med might not be bad if you can tolerate it... not because it is necessarily anxiety, but because it can smooth out your sympathetic nervous system's response to things. I'm starting to think we are frequently diagnosed with anxiety because these meds accidentally often work, not because it is actually anxiety. Frustrating coincidence... Your situation may be like mine. My disease progressed so more medication was needed. Stopping my beta blocker was a disaster. It hadn't stopped working. Hope you find the right answer for you.
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