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Everything posted by Ernie

  1. Hi, I feel like that everyday but a it's written in my file that I have CFS.
  2. Hi, Maybe you can purchase it by internet.
  3. Hi, I won't spend anymore time on this post because it's going nowhere and I don't want to loose my energy arguing about my career and the success I had. Some people just don't want to understand and they make problems and then say they are innocent.
  4. Hi, Yes, K+ deficiency can cause swallowing problems. K+ makes the muscles contract and if you don't have any or have too much you will have contraction problems.
  5. Hi, I just got news from the researching doctor.
  6. Hi, I feel just the same. Last week someone asked me what I expected of others. I replied that I only expected doctors to find a medication to help me be autonomous.
  7. Hi Maxine, I was wondering if your swallowing problem could be caused by a lack of K+ if it's not the consequence of EDS as some fellows with low K+ also have swallowing problems. Maybe you could have your K+ checked when you are in a swallowing crisis.
  8. Hi, I asked this same question to Dr Goldstein who said that they are totally different. In POTS the catecholamines go way over the normal range. In true panic attack catecholamines stay within the normal range. And as the other have mentioned for POTS triggers are orthostatic and for panic triggers can be all sorts of things.
  9. Hi Maxine, I never had that kind of virus. Is your problem with swallowing caused by your EDS or is it something else causing it?
  10. Hi, Congradulation for your son. Take care now.
  11. Hi Mary, I have a hospital bed with a foam mattress which is comfortable. I had to try 4 mattresses before I finally got one which I could sleep on.
  12. Hi, Yes, many of my relatives have migraines and for some itis part of POTS.
  13. Hi, This is part of POTS and its coat 'Coat hanger'.
  14. Hi Ramankatesh, I don't have the NET genetic mutation. My family and I have another type of genetic mutation but the researchers have not found it yet. I faint even if I have hyper POTS because I have severe vasodilation when I stand up and this is why my blood pool. The researchers don't know our etiology yet but I am sure looking forward to find it. I am meeting my family's researcher this coming Monday and hope to learn more about what is wrong with us.
  15. Hi, I had my appointment with the government pension doctor to evaluate if I still qualify for disability pension. The interview lasted 3.5 hours. He asked so many questions and I had trouble concentrating, so sometimes I had to ask him to repeat the question. He was very nice, knowledgeable about POTS and about 75 years old. I think I was his only patient of the day. He also did a physical exam. I guess I should find out in a month or so if I am still disabled!!!!!!
  16. Hi, I am getting worst as I get older and I know I will never get cured because it is genetic.
  17. Hi, You could test the beta receptors of the heart to see if they overeact.
  18. Hi, My vitals don't necessarily reflect how I feel. When they are bad I feel bad, but I might feel bad and they are within the normal range.
  19. Hi, I received part of my Medical file and the doctor wrote: 'I let her know that she will receive a copy of all our records and all tests and consultation with good documentation of our impressions. She verbalised understanding.' I don't know if that includes my Research file?
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