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Corrie J

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  1. I think the video was interesting because I deal with a lot of gut and neurological symptoms....so I can relate. I have found my triggers over the years. Certain foods like diary, peanuts, eggs, corn, gluten and carbs give me severe headaches, heart palpitations, dizziness and abdominal bloating and pain. I have yet to receive a diagnosis for all my symptoms. All food and environmental allergies are negative.
  2. Hi, My symptoms come and go. I too have those good and bad days, however I do not socialize as much as I used to. I have been out on occasion and had to call the ambulance or close to passing out on public transportation. So because of that fear and anxiety I tend to stay home. I can exercise but only for a short time. I become lightheaded and my heart rate is over the top. My worse day is right before that time of the month. Its been irregular now for over a year but my symptoms are 100x worse the day before and I am confined to my bed. I am happy to say that I have been able to find some of my triggers. My gut is kicking my butt. I've noticed GI and neurological symptoms always accompany each other. Its not always 100% but if I manage to stay clear of my triggers I tend to have a good day. Still searching to get diagnosed. God Bless
  3. Hi Yogini, Yes. I had a tilt table test done. I was told it was positive for orthostatic hypotension. But the neurologist disagreed with the results. My blood pressure did not drop until after being given the medicine that makes your heart race. So the neurologist does not think the test was correct. I have a lot of symptoms similar to an autonomic dysfunction. I have been on beta blockers and mestinon but so far they exacerbate my symptoms. My challenge at this point is finding a doctor who can make a clear diagnosis from all my symptoms. Like you stated, there are many doctors who are not clear about this condition. Thank you!
  4. Though we do not see a way, He will make a way. Our healing is coming....stay strong.

  5. I have been seeking assistance from various specialists and physicians over the past 3 years for my condition. I have yet to be diagnosed with Dysautonomia, it just has been suggested. I finally have a primary care who is very compassionate and some what knowledgeable about Dysautonomia, however, he thinks supplements and positive thinking will treat my symptoms. I agree about the positive thinking but supplements are not working. I have had a tremendous amount of lab and diagnostic work up, however, most test are normal. I reside in New York. I have contacted the NYU Dysautonomia Center for assistance. Unfortunately, they do not accept most insurances and out of pocket fees are very expensive(no payment plans). I have also seen 2 neurologists listed on the DINET physician list, however neither one was able to assist me. One physician only treated POTS patients,( I'm told I do not have POTS), the other just wanted to treat symptoms(medication did not help.. exacerbated symptoms ) and he did not think further testing needed to be done. Does anyone live in or around the NYC area who can suggest a doctor please? Thank you Corrie J
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