Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Bonnie really posted a very, very good link from the NDRF site, but I am happy to repost some of the links I've sent before if they will be of any help. I can't really address any of the SS/SSI issues, as I retired for EDS medical reasons from the Texas Teacher Retirement System (we don't pay into SS, so cannot collect from it). I have POTS, as do both my teenage sons...as well as other autonomic nervous system disorders which are, in our cases, secondary to EDS. Yes, I believe and also P. and on our CEDA list have POTS as well. I think I also saw where Caro was also recently diagnosed with some form of dysautonomia as well. There may be other list members, too, who have some form of this. Dr. Grubb (MCO in Toledo) has told me numerous times that " your autonomic nervous system is just 'getting by' in the best of times, and cannot do its job at all when you are sick or traumatized. " Dr. Grubb is a leading expert in the area of dysautonomia, and I highly recommend him, as do several other list members. Other manifestations of autonomic nervous system dysfunction include (but are certainly not limited to) sleep disorders (like Narcolepsy, etc.), IBS, interstitial cystitis (a bladder condition), and others. It is not just limited to POTS, Neurocardiogenic Syncope, and the like. www.potsplace.com http://www.med.nyu.edu/fd/fdcenter.html http://www.ndrf.org/ http://home.att.net/~potsweb/POTS.html http://www.ndrf.org/ParoxymalAutonomicSyncope.htm Love, ~LoneStarRose~ (~~) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 In a message dated 2/26/2004 6:09:52 AM Pacific Standard Time, powerplug@... writes: Does anyone know what kind of doctor you go to to get tested for this? ********** ~~ My GP sent me to my cardiologist for this. Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hi all, All these postings have had me wondering too. I always get very dizzy. I have tachycardia. I have some bladder problems. Etc. etc.... Maybe it is all EDS-related... I have a lot of things on my " Odd Things Account " .... Our bodies just do so many funny things there's no way we can share all of them with docs... I get dizzy the most if I bend down e.g. to pick something up and then get back up again... More that than e.g. when I get out of bed... Aase Marit >Does anyone know what kind of doctor you go to to get tested for >this? There are SO many things I never bring up to doctors as I have >learned that it is best not to overwhelm them. But I have to say my >dizziness upon getting up has gotten to the point that I really >think I should get it checked out, even if only for having it >documented on my record. > > I have always blamed it on my low blood pressure. Or as a child >we blamed it on small nasal passages :-) Until I had my palate split >for orthodontics I used to have problems passing out. The palate >thing may have been a coincidence as it was also puberty which may >have stopped the passing out part. But I still get dizzy and it has >gotten worse - as have so many other things - in the past 2 years or >so. > > Just wondering where to start. Quote Link to comment Share on other sites More sharing options...
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