Rocknrobinz

Help! My internist has given up on Cleveland Clinic for help and after spending a year going from Dr. to Dr. I only feel worst. Someone suggested that I see a Dr. who specializes in alternative medicine (MD with more whollistic approach) and recommended Dr. Dorothy Sprecher (in Novelty, OHIO) who specializes in functional medicine. Has anyone ever gone this route? Any feedback I can get will be helpful. I'm seeing her March 6. I'm desperate and will try just about anything. Also, my Dr. said she had some luck with a patient going to a Dr. in Toledo, Ohio. She couldn't remember his name but suggested I try him. I remember some people talking about going to him a while back. Does anyone know who this is and how to reach him?

Robinbz

I get the same thing. Still don't have answers, though.

RobinBZ

I get hot flashes frequently and sometimes they're accompanied by burning in my torso. Bending down, getting up in the middle of the night to go to the bathroom, lifting or standing too long all can bring them on. Seeing as I have yet to find a Dr. who can treat me, I have no answers about this. I'm seeing someone new tomorrow and hope he can help (Dr. Shields' Fellow at Cleveland Clinic-it was the best appt. I could get before Dec.) Wish me luck! If I get any info. I'll pass it on.

RobinBZ

I just got an appt.with Dr. Shields at Cleveland Clinic (Cleveland) but can't get in until Jan. 30, 2007. Does anyone know if this Dr. is worth waiting for? Anyone know any other Dr. at Cleveland Clinic that I should try to get in to see?

RobinBZ

my Dr. told me to wear the compression stockings during the day (never to sleep in). How long I wear them depends on what I'm doing. For walking or standing I may wear them all day. I won't wear them with certain clothes. today it was 7 hours.

RobinBZ

I'm 52 and am 3 yrs post menapause. I thought alot of my symptoms were menapause but now that I'm post the symptoms have gotten progressively worst. I think alot of those symptoms were POTS but no one can give me an answer.

Good luck.

RobinBZ

I wear knee high compression stockings. They're tight, hot and ugly but they really do help. I just started wearing them in July after my diagnosis. I don't wear them all the time (not with shorts or capris) but I do wear them under long pants, especially around the house, when I want to walk or stand for longer periods of time, and to work. Try them. They really do make a difference. I like the toeless ones.

RobinBZ

Karen:

Good Luck to you. Fortunately, my ulcerative colitis isn't too severe (although the drug companies keep discontinuing or changing the medication that works the best for me). The POTS has been more disabling and so far the meds either haven't worked (Toprol) or have triggered my colitis (Levsin). I am searching for a Dr. in the Cleveland Clinic system that understands both diseases. If anyone knows of one, I'd sure appreciate it. (If not, I'd even take the name of a good POTS doc at Cleveland Clinic.)

RobinBZ

I've had a number of colonoscopies over the years due to ulcerative colitis. the test isn't bad, it's the prep. Definately ask for the little bottle and not the gallon jug. I have not had one since I was diagnosed with POTS and am due for one so I'm glad you asked.

RobinBZ

Thanks for the replies. To answer your question,Bec, POH is postural orthostatic hypotention. In other words, my heart races with the POTS but my blood pressure drops. this is all new to me and I'm trying to figure it out.

RobinBZ

both my cardiologist and my neurologist have told me that there?s NO WAY i could get a blood volume test, unless i was willing to pay thousands for it...

how am I supposed to find out if I have low blood volume? is there any specific name for this "low blood test"?

and if I do have it, what difference does it make?(i know a little about the effects of it, but I already do what you gals do to treat it - a high salt/fluids intake diet- so nothing would change in my life)

anyways, I would love to know if I have it, cuz I also suffer from another terrible disease: CURIOSITY! i can?t stand not knowing whether or not my blood volume is below normal...

take care you all

noam

P.S: i?m a potsie

I had my blood volume tested at The Cleveland Clinic Syncope Clinic. they took care of getting it authorized by my insurance company. You may want to contact them. RobinBZ

I was evaluated by the syncope clinic at Cleveland Clinic by Dr. Fouad-Tarazi but was then sent back to the neurologist who referred me. I don't like him and am looking for a new Dr. to manage my POTS and POH. Anyone know anyone in the Cleveland Clinic system? I also have ulcerative colitis, osteoarthritis, sinus allergies and am sensitive to many meds. RobinBZ

Does anyone have both auto immune issues and pots? I also have ulcerative colitis and osteo arthritis and was recently diagnosed with POTS with vasel vagel and POH. I wonder if there is a link.

RobinBZ

Dr. Frackelton in Westlake (Cleveland) Ohio specializes in heavy metal poisoning.

RobinBZ

I'm from cleveland ohio. I never heard of Dr. Grubb.

RobinBZ