steph37822

Hi, I may get in "trouble" for not being very friendly here, but Steven please be careful where you get your information from. Nina aka mighty mouse, is a forum moderator, I agree with her, if your doctor is blowing you off, you should probably find a doctor from the lists she suggested who can run the proper tests. Have you ever had a tilt table, that is one of the main diagnostic tests for dysautonomia? If none of these docs are near you perhaps you can find an electrophysiologist cardiologist willing to at least hook you up to an event or holtor monitor to record your heartbeats, at home, and see what they are doing? Much as James, aka baby boy, likes to give advice, and relate to people, sad fact remains that he actually HAS NO DIAGNOSIS, nor has he for 3 YEARS. It can be very dangerous for people to self-diagnose themselves, and/or give advice to other people. I've said this to James before. I've had POTS for 7 years now, I'm 27, I also have 4 other rare disorders, and Mitral Valve Prolapse, Inappropriate Sinus Tach and a murmur, I don't have ANXIETY, I don't have panic attacks. I don't think I'm going to die. I don't believe they have to go hand in hand with dysautonomia. If I did have anxiety, I would certainly take medications my doctors thought would eliminate those feelings, I'd imagine they are scary. I'm not sure what James' is trying to accomplish by not putting "artificial medication" in his body, but I'd imagine his quality of life would improve. Again, I don't think this forum is the place for James' problems. Regardless of that my heart is fine, it keeps me going, I work out, I live my life. There are many people on this forum who are very different from one another, and many people have lots of wonderful advice, just please be aware of where your info is coming from, and don't stop until you get an accurate diagnosis yourself--it took me 13 months, but I found one. good luck steve -Stephanie

oops

oops

oops

oops

oops

I'm with Nina on the Sarna, also a fan of Eucerin Calming Creme, and Eucerin Itch relief moisturizing spray, when my hives pop up sporadically. When my hives are all over, I take Atarax (prescription) at night, it's also approved for insomnia by the way. Take Care -Steph Ps. do you think the bumps could be caused by excessive sweat? I broke out in rashes after I had the QSART sweat test, in the areas where they shocked me, and my dermatologist said it was a sweat reaction, the bumps were much smaller than hives. But the atarax and lotions seemed to work just as well for them too, since it was a short term problem. I just wonder what size yours are, my hives turn out like mosquito bites, swelling larger, and spreading, where the bumps caused by the sweat test stayed small and turned a purple-ish color. Have you doc check them out, should probably be different meds for both causes.

oops

oops

oops

oops

oops

Hi Julie, we're born with EDS, it's genetic.

oops

Welcome back Jen, good to see you posting. Hope you feel decent, and your summer is going as well as it can also. Take Care -Steph

oops

oops

Congrats Nina! and well done on the two A's! Now rest up these next 2 weeks! Smarty mcSmart gonna be Dr Mighty Mouse to us someday! Take Care -Steph

More: http://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Citation http://rheumatology.oxfordjournals.org/cgi.../full/43/9/1194 article above: Non-musculoskeletal symptoms in joint hypermobility syndrome. Indirect evidence for autonomic dysfunction? http://www.ncbi.nlm.nih.gov/entrez/query.f...4919&query_hl=2 article above: "Connective tissue" between panic disorder and dysautonomia. (Now that link would really make a person think! I don't have panic disorder, but that's quite a connection to make!) http://www.ncbi.nlm.nih.gov/entrez/query.f...0793&query_hl=6 above article: Why do patients have orthostatic symptoms in POTS? http://www.ncbi.nlm.nih.gov/entrez/query.f...1654&query_hl=6 above article: Living with the hypermobility syndrome. (not related to POTS, but the whole article is there and FREE, and I LOVE it because it's great info!) http://www.ncbi.nlm.nih.gov/entrez/query.f...8260&query_hl=6 above article:Genetic basis of autonomic dysfunction.---It is likely that mutations in more than 1000 of the approximately 30,000 human genes will lead to autonomic abnormalities, either directly or indirectly. This review highlights some of these. (WOWSERS! ) OK i'm going a bit further than I'm sure you wanted, guess I'm looking at articles that I would like to read! So now I'm going to bed.......the ones at the top are probably more what you want. nighty night, googles mcgoogles a bit much! -Steph

oops

oops

oops

oops

oops

oops