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Ernie

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Everything posted by Ernie

  1. Hi, You can also do the other tests if you want to.
  2. Hi, I can give it a shot but I am no doctor. Your blood is circulating too fast when you are supine. Your blood left the main blood vessels when you were upright. Nerve damage POTS
  3. Hi, Cymbalta help with pain and low BP. When I had to stop it at Mayo I had so much vertigo that I had to walk touching the walls I barely have joint pain with it. I am not the type to wait when I want to try a new med, especially when I feel that it is going to help me. So I find a doctor who will prescribe it.
  4. Hi, I think you should get a TTT if you want a diagnosis.
  5. Hi, To test for dysautonomia you need the supine and the standig done during the same visit. It can tell you what can of POTS you have.
  6. Hi, I think you have to be careful about ulcers first and if the ulcer is not controlled it can turn into cancer.
  7. Hi Sophia, When I did my first TTT at NIH, Dr Goldstein said that my BP was zero, that I had no blood pressure. It lasted for a few seconds and my heart was still beating. Then they put me down and my BP spiked. I don't remember how much time it took to get back to some normal but I felt like ****.
  8. Hi, First of all, in the 8 last years I have realized that when I doctor does not believe you there is no point in trying to convince him. It is better to find one who is open minded. I also took metropolol for 6 weeks and it made me faint more, depressive and had more BP swings. I am now on Propranolol with no side effects. Hormones can surely cause this. All my orthostatic hormones are out of wack when I stand up. I have been tested more than 12 times for my catecholamines and they are sky high. My BP is all over the place. From 220/170 to 0. This is cause by my hormones and my body not being able to adjust my BP. When I go upstairs I get chespain, I have to sit, take a break and get really syncopal.
  9. Hi Ann, Don't worry. You are not scaring me. I already know that those doctors are biased against us. I know that I have to convince a doctor who does not believe that I am disable that I am really disable. This is so unfair that the doctors dismiss all your tests and your testimony. I will bring my test result and since you told me that they don't know anything about our disorder even if they say they do I will explain to him what the tests mean. I will see an internal medicine doctor.
  10. Hi Corina, I am shocked that the doctor wrote you could do your groceries because you could get a bread on your scooter. It seems that he exaggerated your capacity. I am glad you were able to get your pension.
  11. Hi, Welcome aboard. You will make many friends here.
  12. Hi, Thank you very much for your help. I will bring my medical file and I am taking notes of my limitations. I wonder if he is going to take my vitals standing up!
  13. Hi Suzy, Mestinon is used for hypotension. It is also used for Myastenia Gravis.
  14. Hi, I am glad you had a satisfiying visit. When you want a diagnosis you stop your meds. When you want to see if the present treatment is working you keep your meds.
  15. Hi, In POTS there is an overshoot in phase IV of the Valsalva. In PAF there is no overshoot.
  16. Hi, Congradulation for getting the rehab approved. I hope she gets a bed soon.
  17. Hi, Welcome aboard. I can't really answer your questions because I also have POTS. Take care
  18. Hi, I forgot to mention that the doctor already has my whole medical file and the document my general practicitioner has filed out.
  19. Hi, I have an appointment with the doctor who works for the government to decide if I am still invalid. This is the first time I have that kind of appointment. I don't know what to expect, what to say and what to do. Do any of you have any experience or advice? Thanks You can PM me if you prefer.
  20. Hi, You need a supine and standing catecholamine test. Mine was ordered by an endocrinologist or internal doctor.
  21. Hi, Have you tried Immodium or another of those meds?
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