I'M Sick Of This, I Need A Doctor

[scarfgirl]

I'm tired of a local GP who can only say "You need to speak to your specialist about that." , and a specialist that I have to travel six hours to visit only to spend 15 minutes with him while he totally ignores my questions and just reads from some dysautonomia script. I still have no clue what might be causing any of my symptoms and no one wants to run any tests on me. I haven't seen any real improvement and I've been sick for a decade now. I want a good doctor, damnit. I'm limited though, in that my insurance is Medicaid and Medicare. Medicaid can only be used in the state of GA, so I'm pretty sure any place I eventually find will only take my Medicare, which doesn't cover a whole lot and isn't accepted at a lot of places. Still, if I have a pretty good guarantee that I'll get some results from my visit, I'm willing to risk the debt. Anyone have any suggestions? I'm in South Georgia.

[Tia Koul]

HI.. I really don't know how to help but here is a link of cardiologists in Atlanta who do tilt table testing. If some of them do tilts, then some should know how to help you as well. I would do some cross referencing on sites like ratemds.com or vitals.com

http://www.medicinenet.com/tilt-table_test/atlanta-ga_city.htm

you can do searches for other area's as well from that link, so maybe you can find someone or start calling offices and see who treats pots.

God luck!

[hilbiligrl]

I recently fired my doctor and out of word of mouth referral from a psychologist, i submitted my case to a local doc on my are who works on rare cases..... and I am on medicaid as well, thankfully they took me in after going through my records and screening me. (but i had been going through this 'bad doc' relationship for many years now and couldnt find a good doc who would put up with my 100s of sypmtoms. So, Before I found out that this new doc was accepting me (i found out 3 days ago, after waiting 2 mths), i at first called around the family, friends, asked on facebook and every therapist or doctor or specialist i talked to, i asked them who would they refer as a good primary care doc, someone who is patient and likes a challenge or deals with chronic stuff.... cuz that was my missing piece. I was calling doctor offices and asking them if they except new patients, but non where.... so i would call the big doctor groups and talk to a main person and asked if they had any docs that might treat chronic illness patients, or patients with rare diseases, etc. I was also, gonna wait till i got to vanderbilt this feb and ask them who they would prefer (if they new any in my area).

So, with medicare or medicaid.... call the medicaid number and find out who is accepting patients, even ask medicaid if they know of docs know for dealing with chronic, rare or uncommon cases. Then call docs offices and don't be afraid to ask the docs nurse of who you are trying to find stuff about. Some will help, some won't, but never stop pushing and don't let the 'ignorant/cold' ones stop you.

hope this helps!

hilbiligrl

[friday7]

I'm tired of a local GP who can only say "You need to speak to your specialist about that." , and a specialist that I have to travel six hours to visit only to spend 15 minutes with him while he totally ignores my questions and just reads from some dysautonomia script. I still have no clue what might be causing any of my symptoms and no one wants to run any tests on me. I haven't seen any real improvement and I've been sick for a decade now. I want a good doctor, damnit. I'm limited though, in that my insurance is Medicaid and Medicare. Medicaid can only be used in the state of GA, so I'm pretty sure any place I eventually find will only take my Medicare, which doesn't cover a whole lot and isn't accepted at a lot of places. Still, if I have a pretty good guarantee that I'll get some results from my visit, I'm willing to risk the debt. Anyone have any suggestions? I'm in South Georgia.

You took the words out of my mouth. I've been seeing one doctor after another and none of them even knows what POTS is. I've also been going through this for a number of years and I'm on Medicaid. I am getting quite sick not being treated as a POTS patient. I have a real illness that is totally being ignored. Sorry I can't be of any help to you other than saying I know how you feel and I want a good doctor, damnit!

[friday7]

I recently fired my doctor and out of word of mouth referral from a psychologist, i submitted my case to a local doc on my are who works on rare cases..... and I am on medicaid as well, thankfully they took me in after going through my records and screening me. (but i had been going through this 'bad doc' relationship for many years now and couldnt find a good doc who would put up with my 100s of sypmtoms. So, Before I found out that this new doc was accepting me (i found out 3 days ago, after waiting 2 mths), i at first called around the family, friends, asked on facebook and every therapist or doctor or specialist i talked to, i asked them who would they refer as a good primary care doc, someone who is patient and likes a challenge or deals with chronic stuff.... cuz that was my missing piece. I was calling doctor offices and asking them if they except new patients, but non where.... so i would call the big doctor groups and talk to a main person and asked if they had any docs that might treat chronic illness patients, or patients with rare diseases, etc. I was also, gonna wait till i got to vanderbilt this feb and ask them who they would prefer (if they new any in my area).

So, with medicare or medicaid.... call the medicaid number and find out who is accepting patients, even ask medicaid if they know of docs know for dealing with chronic, rare or uncommon cases. Then call docs offices and don't be afraid to ask the docs nurse of who you are trying to find stuff about. Some will help, some won't, but never stop pushing and don't let the 'ignorant/cold' ones stop you.

hope this helps!

hilbiligrl

You said you found the doctor who just accepted you as a patient through word of mouth. But prior to being accepted you did all of this work calling docs and asking questions.

Did you find anything of any value by calling around?

[scarfgirl]

I've tried the word of mouth thing (that actually worked in Seattle), and the calling around thing, but I haven't found anyone in GA who treats POTS. There's a few doctors who will diagnose, sure, but that's not the same as treating at all. And when it comes to a PCP, there's only two doctors in this podunk town, and both are perfectly happy treating sinus infections and diabetes all day long.

I wanna go some place where I spend a whole day having tests of all sorts run on me. If I could narrow down the type of POTS I have, and get a clue as to what causes it, I think I'd be able to find a treatment that works. Beta blockers and florinef are not my answer, but that's the only suggestion I'm ever given. My 'specialist' scoffed at Midodrine and said he was glad it was being taken off the market, even after I explained that it was the only drug that ever made a real difference in my activity levels.

Friday7, sorry to hear you're in the same post, but it makes me feel better to know I'm not the only one with this problem. Thanks for sharing

[crowebirds]

Kexia -

Visit this website-- www.iaccheart.com/dr_davis.aspx --for Dr. Davis. He treats new patients and he is close to you. I don't know about the insurance issue, but I can tell you that he treats a woman with one of the worst cases of Dysautonomia and he is one who cares.

Blessings,

Robin

[scarfgirl]

Kexia -

Visit this website-- www.iaccheart.com/dr_davis.aspx --for Dr. Davis. He treats new patients and he is close to you. I don't know about the insurance issue, but I can tell you that he treats a woman with one of the worst cases of Dysautonomia and he is one who cares.

Blessings,

Robin

Thanks Robin, I'll check into that.

[Lovebug]

I feel for you as I had to go through a few docs before I found one. I was willing to travel and pay out of pocket if I had to but thankfully my doctor is local (within 45 miles) and takes my insurance. I was lucky enough to be referred by my GYN doctor....YES, my Gyn told me about him as she was the only one that would listen to me. Anyway, he's a cardiologist but just happened to accumulate Dysautonomia patients through the years. However, you must be careful with cardiologists b/c the one I saw just before him (he was actually an EP cardiologist) told me, "your heart's fine" and when I said "but my BP & HR are too high, somethings wrong with my nervous system" his reply was "your heart's fine". I knew I was doomed until I got recommended to the other doctor. Anyway, the first thing he told me was to read this book (I attached the website link but there is a book & I suggest you read it): http://www.mitralvalveprolapse.com/

Furthermore, he told me to do my best to stay away from the medical community b/c regular practitioners will screw us Dysautonomics up! LOL! Anwyay, he told me to ALWAYS start medications at a pediatric or neonatal type dose b/c of sensitivity to meds. He place me on a low dose Beta blocker (inderal) which has helped but I still had lots of pain. Then he started me on Celexa and my abominal pain was immediately improved. I still have symptoms and I still water load LOTS (3.5-4 liter/day) but I'm much better.

I hope you find a doc and you get to feeling better. Note the website that I linked has a clinic in Alabama (maybe you could travel there...?).