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About corina

  • Birthday August 31

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    the netherlands

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  1. I think it would be best to ask your doctor re a test for hypoxia gossamer4448
  2. Not sure if you are on meds but I think it would be best to discuss these problems with your doctor Outaker! Hope you will find some relief soon
  3. Personally I never go to the ER, when I go out I always bring a bottle of salted water, a salty bite, an apple or whatever I think I might need once I get in trouble. When I feel I might get in trouble before I leave the door, I decide to stay inside. It may need some time to figure out what you need to stay safe but for me this works really well!
  4. Caty, have you noticed this page: it can be found at our home page under Information Resources!
  5. I didn't try this med but it's on our DINET/What helps list also. I know from the past that (former) members have tried it. Here's a link to our What helps list:
  6. Welcome everyone, glad you found us!
  7. Unfortunately I can't remember for sure but I think I had delayed reaction. I do remember that I had electrodes all over my head, bp measurement and had to bike for a certain amount of time (can't remember for how long). If interested in this test you could call them, they are on our Physician's list (Prof J.G. van Dijk LUMC Leiden The Netherlands)
  8. Hi Terry, I'm sorrry you're doctor doesn't seem to be of much help. I agree with Pistol that it might be best to ask for your results and find a new doctor who wants to work with you. Take care!
  9. Bombsh3ll, that was one of the tests my doctor located at the Leiden University Medical Center in the Netherlands did at their autonomic unit. I think the London Clinic (Mathias) may do this too? Hope this helps!
  10. Every time I come here now my password is rejected so I have to reset it? @Peter Charlton, I have asked one of the admins to try help fix this problem
  11. Edited to add: sorry this is a 2014 article on SFN in POTS, I think not the article you mentioned? Here's the abstract, you can read the full-text of this article per request from the authors on ResearchGate using a link. https://www.researchgate.net/publication/260947728_Small-fiber_neuropathy_with_cardiac_denervation_in_postural_tachycardia_syndrome
  12. Welcome everyone, glad you found us! Feel free to ask the questions you need answers to, I hope knowing that you're not alone may be a comfort to you all!
  13. Could you ask your family doc to help guide you? I so understand you need help with this!
  14. I'm sorry I didn't notice this one earlier. I will move it to the Dysautonomia Discussion forum as it will apply to many more members (who may not read this chit-chat forum)!
  15. Though not in the US, we use it quite often. Fresh vegetables can be a problem (they often deliver them with just one day to go) but all in all quite worthwhile. We have several free delivery possibilities, ie when ordering 6 bottles of water or when delivering on a specific day. I can't do grocerie shopping myself so when my husband doesn't have time or when he's ill we use an online service. Makes my/our life much easier! edited to add: oh and they deliver into our kitchen which is great!
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