worknonjoy Posted December 6, 2006 Report Share Posted December 6, 2006 I'm curious what is the cause of everyone posting here for your POTS or OH or whatever (is there something else?) Is there one thing that is most common? My cardiologist said I had OH and then said it went with Mitral Valve Prolapse (which I have). I have CFIDS, so I know it goes with that. My neurologist though wants to find out exactly what caused it. What is everyone else's experience? Quote Link to comment Share on other sites More sharing options...
goldicedance Posted December 6, 2006 Report Share Posted December 6, 2006 I wish your neurologist good luck in trying to determine what caused your POTS. There are many theories out there with regard to possible causes.Mine seems to have been triggered by a mycoplasma infection. Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 7, 2006 Report Share Posted December 7, 2006 I have POTS, OH, and I'm still trying to figure out which other things I was diagnosed with are actually true! An antibody was found in my blood that antagonizes m2 muscarinic receptors. Basically this antibody messes up the process of the brain sending messages to my heart, lungs, veins, and other smooth muscle tissue in my body. We found this in a study done at Johns Hopkins. M2 receptors are a fairly new discovery, I guess. I asked my neurologist about them because I was trying to do more research. She seemed kind of embarrassed that I knew as much about them as she did. It must be rare to have an antibody to m2 receptors because there is very little info on them online and I've never found anyone else with this antibody. Rachel Quote Link to comment Share on other sites More sharing options...
sfrnklin Posted December 7, 2006 Report Share Posted December 7, 2006 Hi guys. I am new to this site, but not new to POTS. My POTS is secondary to Joint Hypermobility Syndrome. I'm like rubber girl (hehehe). I see Dr. Grubb in OH. If you see him then you are familiar with his chart that shows this. If not, basically, my veins are real pliable and do not vasoconstrict very well and keeps all the blood in my lower extremities when I stand. I've read so much interesting stuff on this site. I hope to make many friends here and share and learn much info with you guys.Later. Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted December 7, 2006 Report Share Posted December 7, 2006 i have no idea whats casuing my pots ive had it since april and its not goign away i see Quote Link to comment Share on other sites More sharing options...
morgan617 Posted December 7, 2006 Report Share Posted December 7, 2006 No clue whatsoever. Wired wrong at conception.....welcome sfrnklin! Quote Link to comment Share on other sites More sharing options...
Suzanne Posted December 7, 2006 Report Share Posted December 7, 2006 I got pnuemonia, hospitalised etc. Never recovered. Doc thinks the illness triggered what I may have already genetically had, but it had not interfered with my lifestyle. Now, it totally dominates my whole life and I am over it!Welcome to newbie sfrnkln (tricky one to write!). Come and learn with us Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted December 7, 2006 Report Share Posted December 7, 2006 i have no idea what caused mine but i think the military is saying chemicals or innoculations for me... just because i got sick while i was active duty.dionna Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 7, 2006 Report Share Posted December 7, 2006 There is no one single common cause--rather, there appear to be many possible causes for different people. Please read the main DINET site, particularly under "causes" and "mechanisms".http://www.dinet.org/look in the left margin of the main page to find what you want to read.Nina Quote Link to comment Share on other sites More sharing options...
sfrnklin Posted December 7, 2006 Report Share Posted December 7, 2006 I was originally diagnosed in 2002 by a local cardiologist (EP) dr. in my hometown, but he could not tell me how I got it. I was angry and in denial for many years wondering how I could be struck down with such a debilitating disease. It was nice to be hooked up with a specialist in this and finally told that I did nothing wrong and that I was born with it and that it was secondary to JHS (Joint Hypermobility Syndrome) and that it lied dormant and popped up in my 30's like the case of the Wiggles guy, which it usually does for some people that have it genetically. It doesn't make my life any easier, but it answered that burning question I had for so many years.Thanks for the warm welcomes.Susan f. Quote Link to comment Share on other sites More sharing options...
worknonjoy Posted December 8, 2006 Author Report Share Posted December 8, 2006 I have POTS, OH, and I'm still trying to figure out which other things I was diagnosed with are actually true! An antibody was found in my blood that antagonizes m2 muscarinic receptors. Basically this antibody messes up the process of the brain sending messages to my heart, lungs, veins, and other smooth muscle tissue in my body. We found this in a study done at Johns Hopkins. M2 receptors are a fairly new discovery, I guess. I asked my neurologist about them because I was trying to do more research. She seemed kind of embarrassed that I knew as much about them as she did. It must be rare to have an antibody to m2 receptors because there is very little info on them online and I've never found anyone else with this antibody. RachelSo interesting! I have so many things wrong with my physical being (mentally I'm pretty good! ) I keep thinking that there must be something that has triggered all my problems. I'd love to go to someplace like Johns Hopkins and have them check everything out! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted December 8, 2006 Report Share Posted December 8, 2006 i was born this way.. at 12 it got more severe..(though didint know it was pots) then again at 19-20 it got to the point that i was bed bound for 3+ months..i think mine is passed thru DNA line on my moms side.... Quote Link to comment Share on other sites More sharing options...
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