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About cynog

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  1. As I have been researching dys. I have noticed alot of people mentioning gallstones and dysfunctional gallbladders. I was told recently after a CAT scan for kidney stones (soooo painful) that I also have gallstones. Does anyone know how that or if its connected to dysautonomia?
  2. That is so awesome THanks for your replies! It has given me some HOPE!! Im scared as it will be yet another HUGE expense to my family, so I have alot riding on the outcome. I have a call into them and am waiting for the new patient coordinater to get in touch with me.
  3. Did she diagnos you? Did she do a ttt ? Thanks so much for the info!
  4. Hi all. I am desperately trying to find a doc. I live in Idaho but have family in California. Does anyone go to a doctor there that totally understands this disease? (This may be a repeat. I posted it yesterday but dont see it anywhere on the board so Ill post it again OOOPS Found the post. Sorry for the repeat! Brain foggy lately!
  5. Hi all. I am desperately trying to find a doc. I live in Idaho but have family in California. Does anyone go to a doctor there that totally understands this disease?
  6. Thanks for posting that. I am currently in the no diagnosis ****. Makes you crazy. I feel like I cant tell anyone what I have because if I am wrong, I can just see everyone rolling there eyes. I have no idea what to do next. I have been through so many docs who belittle me and send me on my way after 5 mins of their time. Right now I feel like just giving up!
  7. Basically i had strep since i was 9 on and off. When they removed my tonsils/adenoids they found they were very full of the infection even though i had no symptoms at the time. They told me i was a carrier because if someone in my family had strep, I probably did the weeks prior to. Also if I became run down, I would immediately get strep. Since coming down with POTS 3 years ago, the strep attacks increase so i just had the tonsils removed. I have not had one problem since Have any of you had a sleep study. I did and they found that while I dont have sleep apnea, I desaturate into the 70's
  8. I was told by my doctor that without a official diagnosis of any certain thing I am n ot eligible for disability. Is that true? Or did he just not want to help me?
  9. Thanks for your feedback...the challenge I guess will be finding a doctor...thats where im at a loss. I had several episodes of very bad strep throat and then a tonsillectomy. Not sure if this could have aggravated things. I have been reading about EDS and am starting to think that maybe this is a possibility. I have many of the manifestations of this disorder. Does anyone know who specializes in this? I have done the poor mans tilt table test. I actually stood without moving for close to 2o min. In that time my bp went up from 130/85 to 145/105, heart rate went from 9o to 120-130, fe
  10. Hi all! I'm new to this board and looking for some help. For approx 18 mos been having bizarre symptoms. The one that brought me to the doctors was my high heart rate and swelling in the hands and feet (especially with exercise and heat). I have had all kinds of tests. My doc thought it was a pheo, sent me to endo and she ruled it out. A few months later I saw the show on TLC (Mystery Diagnosis?) and thought the lady sounded just like me except I dont completely pass out. Started researching Dysautonomia and found this site. I was floored! I have every symptom! So I printed it out an
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