jesse1919 Posted April 26, 2005 Report Share Posted April 26, 2005 Hi all,Well, you've probably heard a similar story before...I went to Mayo and got a POTS diagnosis and now I'm looking for a doctor in LA for follow-up. I found the two below but haven't tried getting an aptm yet. I can't believe there are only 2 POTS doctors in LA?! It would be really great to find one in the South Bay area (south of Santa Monica, west of Long Beach). There must be 1000 doctors in this area.-Jesse Dr. Frisca L. Yan-GoUCLAB200, 300 Medical PlazaLos Angeles, California 90095310-794-1195POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Migraine Syndrome, Chronic Fatiguefrom www.ndrf.orgWilliam P. Stuppy, M.D., F.C.A.P., F.A.C.P., F.A.C.G. 1136 W. Sixth St. Suite 401 Los Angeles, CA 90017 Specialty: Gastroenterology; Heart rate variability (HRV) and esophagogastric pH. GERD (gastroesophageal reflux), IBS (Irritable Bowel Syndrome), Panic Disorder, and PTSD. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted April 26, 2005 Report Share Posted April 26, 2005 welcome!unfortunately i don't have any additional info for you, and sadly enough having two "POTS docs" in your area is more than most; i know LA is big, but they're few & far between everywhere. good luck!!:-)melissa Quote Link to comment Share on other sites More sharing options...
jesse1919 Posted April 29, 2005 Author Report Share Posted April 29, 2005 PS The other idea was to simply start calling all the nearby general practice docs to see if they would/ could treat me for POTS? That might get me an apointment sooner than seeing a specialist but in the long run that may not be best? Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 29, 2005 Report Share Posted April 29, 2005 That's precisely what I do. My primary care physician and cardiologists are not POTS specialists. But they'll pour through all the research with me. They'll send email and make phone calls to 'experts' around the country and they are willing to think outside the box and treat me as an individual.I am in socal as well, but I've never been to any of our 'specialists'. Good luck in your healing journey.EM Quote Link to comment Share on other sites More sharing options...
nantynannie Posted April 29, 2005 Report Share Posted April 29, 2005 Hi Jesse,I live in the LA area and I see Dr Yan-Go on a regular basis. She has Dysautonomia herself, as well as Lupus, so she is somewhat experienced and sympathetic to our issues. She also specializes in sleep disorders which is why I chose to see her over the other doctor you mentioned. I did speak to the other guy over the telephone, but he did not accept any insurance and wanted cash. Dr Yan-Go is with UCLA Neuro, which is a highly respected Hospital and Department. She is a bit scattered but highly intelligent, definately worth a try.Ann Quote Link to comment Share on other sites More sharing options...
jesse1919 Posted May 7, 2005 Author Report Share Posted May 7, 2005 Thanks for the input. I talked to my original GP. She was surprised at my POTS diagnosis because I wasn't passing out, but at least she had seen one patient with POTS before. She thought I should see a specialist and gave me referals to two local docs: a neurologist and an electro-cardiologist. She said POTS is 'esoteric'... that's for sure. I have an appointment with the neurologist in a month. I'll decide how to proceed based on how that goes. Thanks for the info about those two docs Ann. I also found the UCLA web site:UCLA Center for Autonomic Disorders Jesse Quote Link to comment Share on other sites More sharing options...
blackbirdsings Posted May 8, 2005 Report Share Posted May 8, 2005 I don't know of the doctors in the LA area. Overall I have found finding a primary care doctor that is willing to work with you, go over research, call the specialists and not give up is good. From there have your specialists. It is a good idea to keep a primary care doctor for when you have non POTS related problems, such as infections that need to be treated. A good pimary care doctor that is somewhat understanding to the POTS is good when you have an infection, if they will come up with ideas and ways to treat you, so they don't cause more problems with your POTS. Hope that helps some! Good luck! Quote Link to comment Share on other sites More sharing options...
EarthMother Posted May 8, 2005 Report Share Posted May 8, 2005 POTS certainly is esoteric (of I looked it up at dictionary.com -- understood by only a few people) case in point your GP didn't know that you don't have to be one of the folks who pass out to have POTS. But it doesn't have to be. I agree with blackbird what is most needed here are doctors willing to educate themselves.Do these specialists in her referral actually have any POTS experience? I saw a nerologist one month before my susequent POTS diagnosis (by a cardiologist) and even though I couldn't stand up, was terribly sick etc. she insisted it was stress. Not to say a neuro isn't the way to go -- it's just hit and miss. What I did do in that next month is start collecting data. I took BB and HR readings in the a.m., p.m. and at night -- lying down, standing up, lying down ... or standing up and then standing up for 3-4 minutes etc. I made "pretty" tables that had big red numbers for each time my HR jumped up 30 points or my BP fell dramatically. When I did get in to see a cardiologist the diagnosis was easy -- he walked in saw my charts did a couple of readings himself -- walked out and called a colleague on his cell phone saying "I have a woman with POTS in my office, what are we doing with POTS these days?" When he came back we scheduled the tilt table test and the journey began.Let us know how your appointments go. Good luck on you healing adventure.EM Quote Link to comment Share on other sites More sharing options...
jesse1919 Posted May 30, 2005 Author Report Share Posted May 30, 2005 Thanks for the posts. So I called the neuro office to see if he actually knew anything about POTS (like EM said that's not a given) and naturally the receptionist wouldn?t bother to ask the doc if he could treat me, she just canceled my appointment when I said I wasn?t sure if he could help me. I sort of doubt he could anyway so I didn?t argue with her. Of course she never heard of POTS. So then I made an apmt with the EP cardio but that isn't for 6 weeks zeash. And I'm still not positive that this EP cardio knows POTS either- the receptionist said she hadn't heard of POTS but was sure the doctor had. But would she actually go ask? no. I also asked my Mayo doc (another receptionist) for a referral to the UCLA autonomic neurology center- I'm sure they know POTS. I?ll have to wait and see if her highness can be bothered by such trivial things. If not I'll have to try my local doc for the referral, but she's not the one that diagnosed me I don't see her as willing to learn about POTS to treat me BUT I didn't ask either... So the saga continues. At least I'm feeling ok and able to work part time as I wait. Jesse Quote Link to comment Share on other sites More sharing options...
persephone Posted May 30, 2005 Report Share Posted May 30, 2005 Wow! A guy with POTS- I don't think there are too many (on these boards, anyway). I can't actually help with what you're asking, as I'm from the uK, but I hope you get something good sorted soon :-)Keep us posted on how it goesP x x Quote Link to comment Share on other sites More sharing options...
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