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corina

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Everything posted by corina

  1. corina
    Hi Jade123, welcome to DINET! I'm sorry you are having so many problems, hope someone will be able to answer! Re your question on bumping: it's something we normally don't allow but I realize you are very new and had a hard time figuring out how to join us so please don't worry about it!
  2. corina
    When things get really bad I use incontinence products. I really hate that but I hate it even more when my bowels empty without using them! I also have urine incontinence which I find easier to deal with. At the moment it's more or less in control but can pop up any time
  3. corina
    Hi everyone, welcome to DINET!
  4. corina
    When I did a little research on this, this is what I found on the internet: Physicians and researchers from the American Autonomic Society have published an advisory statement regarding the "transvascular autonomic modulation" procedure. The autonomic experts do NOT recommend this procedure as a treatment for POTS or any other form of dysautonomia. They note that there is no data at all to support the utility of transvascular autonomic modulation and there is no scientific rationale behind it.
  5. corina
    Friday, could it help you make these calls when you pretend to ask all this for another person, someone who is really close to you? I found out that I find it much easier to be assertive when it isn't about me (I thought that really odd for why could I chase doctors for loved ones, ask difficult questions and not for myself?). This helped me overcome my fears, nowadays I find it much easier to advocate for myself!
  6. corina
    stellaluna, I can imagine how frustrating this must be for you. At least the good thing is that you now know what is on paper and you can explain what happened to any other POTS educated doctor. S/He def will understand!
  7. corina
    Happy Thanksgiving to all of you!!!
  8. corina
    Hope you're on the up now Rich and that the mito doc will have some answers!
  9. corina
    Hi everyone, welcome!
  10. corina
    Not sure why but I usually am worse during winters. For some reason cold doesn't match with me. I feel keeping me warm takes a lot of energy, may be it has to do with blood sugars (I'm very low and pretty high due to the dys)? I know my metabolism is quite high so perhaps that has to do with it?
  11. corina
    Thanks for sharing Rachel!
  12. corina
    Thanks DizzyGirls, for sharing!
  13. corina
    Hi everyone, welcome to DINET!!!
  14. corina
    Have you checked with your pharmacy? They may be able to hep you understand more and decide how to procede!
  15. corina
    Thanks for fixing the link Rachel!
  16. corina
    Wow Rachel, that is amazing. Big hats off to Tyler for working so hard!!! Btw, your last link (pubmed one) doesn't work for me, not sure if it works for others!
  17. corina
    I looked into this blog and consider it advertisement. And to be honest, the cheapest way to get into this is buying DVD's at a cost of $ 250,= which doesn't sound cheap to me! Thing is that people who are desperate are vulnerable also and willing to pay everything to get their lives back. I would feel very sad for them to loose so much money without being cured!
  18. corina
    Good luck 25!
  19. corina
    I think several of our UK members have been, though I'm not sure whether they are still active here. She seems really good so I hope you'll have a great experience and will get answers to your questions!
  20. corina
    I have checked my Omron at my doc's office. It works as accurate as manual measurement.
  21. corina
    Fitnesskelly, just fyi, as this is a poll it will show up on top when someone votes (so posting isn't necessary to get it on top!)
  22. corina
    Hi Robstah, I think you'd best ask your doctor, don't forget that though we share the same disease, we are all very different!
  23. corina
    Hi everyone, welcome!
  24. corina
    Glad you had such a great appointment and that your daughters got diagnosed! It makes life much easier having things comfirmed by a medical specialist doesn't it?! I have the vertigo you describe on and off. It may take 1 to appr 3 days where I cannot move/leave my bed due to extreme dizziness. Slightly lifting my head makes me feel everything around me spinning. Not sure why this happens but SO glad when it's over!
  25. corina
    Hi Evergreen (or anyone else who worries about tis!) don't ever feel you are posting too much. There is no "too much"! In finding answers we need to educate ourelves as best as we can! That's what DINET is here for, to help you out!
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