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Everything posted by Crow

  1. I notice that the Vandy group rarely mentions Ehlers Danlos syndrome in their articles, which is kind of a bummer.
  2. http://news.vanderbilt.edu/2013/06/skin-salt-blood-pressure hmmm, interesting eh? EDS folks.
  3. NIH Videocast today @ 4pm EDT Demystifying Medicine 2013: The Mitochondrion & Its Diseases http://videocast.nih.gov/summary.asp?live=12411
  4. Anyone participating?
  5. I'm getting a flu shot later today, even though I haven't had a cold or the flu in about 15 years and I don't get out much these days. I know if I DID get the flu it would really clobber me so I am taking a chance on the shot.
  6. If you have EDS, please be careful in limiting magnesium. EDS folks have trouble with magnesium absorption as it is (which is why Dr Francomano recommends epsom salt soaks).
  7. same here and at one point I threw up every time I went up the stairs. I take zofran a lot & spanx and pressure hose help.
  8. http://videocast.nih.gov/summary.asp?live=11960 Mitochondria: dynamic organelles critical for human health eventually it'll be available for download at http://videocast.nih.gov/Podcasts.asp?c=3 after
  9. For some reason I am having a hard time finding just a plain old list or chart of high sodium food, online. (Anchovies, cottage cheese, etc etc.) Does anyone happen to have a link? I'm starting to get a bit tired of my old standbys.
  10. That's been my exact experience this week. :/ My heart rate gets down into the 40s when I sleep; I don't know about my blood pressure.
  11. I know what you're going through. I was at the top of my profession, graduate degrees etc. Make sure as you go through the LTD process that you know what is in all of your medical records and that all your Drs know that you are in the process of applying/getting approved. It's an overwhelming process, to be sure, but it is necessary for your future. Honestly, I used the application process to help get through the grieving process for my former life. I got really anal with it and got my frustrations out that way. Felt like I was accomplishing something again. xoxo
  12. Looks like there's been some articles on it? http://www.ncbi.nlm.nih.gov/pubmed?term=%20breast%20ehlers%20danlos
  13. Northera / droxidopa was rejected by the FDA yesterday: http://www.nasdaq.com/article/fda-seeks-more-data-from-chelsea-for-northera-nda-review---update-20120328-01567 and trials for Midodrine are beginning: "Trials to Address Efficacy of Midodrine 18 Years After It Gains FDA Approval" http://jama.ama-assn.org/content/307/11/1124.short?rss=1
  14. Please, anyone with POTS from Ehlers Danlos Syndrome, talk to your Drs before exercising & messing up your joints even worse. ...glad it worked for you though
  15. I did too much one afternoon & then couldn't stop throwing up. Took several zofran IV's in the ER to get me to stop. My Dr looked about 14 years old LOL & her boss had never actually seen someone with Ehlers Danlos so came in to talk to me. They were nice but I waited about 6 hours to be seen. Hospital rhymes with "anderbilt" LOL so they had my info from the clinic.
  16. The FDA has updated their docket on Midodrine "FDA/OC Letter to Parties from the Office of the Commissioner, dated January 23, 2012" http://www.regulations.gov/#!documentDetail;D=FDA-2007-N-0475-0037 click on the "view attachment" PDF icon to read it I don't have the congitive capacity right now to figure out what it means LOL.
  17. sounds familiar "For the reentry, Sergey, Mike & Satoshi will wear the Russian Kentavr anti-G suit under their Sokol suits. [The Kentavr garment is a protective anti-g suit ensemble to facilitate the return of a long-duration crewmember into the Earth gravity. Consisting of shorts, gaiters, underpants, jersey and socks, it acts as countermeasure for circulatory disturbance, prevents crewmember from overloading during descent and increases orthostatic tolerance during post-flight adaptation. Russian crewmembers are also advised to ingest fluid-electrolyte additives, viz., three sodium chloride tablets during breakfast and after the midday meal, each time with 300 ml of fluid, and two pills during the meal aboard Soyuz before deorbit.]" http://www.spaceref.com/news/viewsr.rss.html?pid=39140
  18. http://www.theheart.org/article/1301615.do "After one year, the syncope rate was numerically lower in the fludrocortisone group in both the intention-to-treat and on-treatment analyses, but the difference was not statistically significant."
  19. http://articles.philly.com/2011-09-25/business/30201008_1_applications-for-new-drugs-proamatine-fda A drug in limbo, Catch-22 for FDA
  20. I tried but it made me sicker / exacerbated my EDS issues. I'm going to try again, though, when the weather cools if they'll let me (if not I'll just do it anyway but they won't have my data).
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