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Hello. I have just been told I have POTS and really am not doing well. What is the best route to take? To go to the research centers? Find doctors in the area with interest in POTS? Can anyone tell me the best dysautonomic centers and doctors?

Does POTS cause a lot of neck pain/stiffness that is worse when standing? Thanks. Jennifer

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Sorry you have been dx but there is alot of wonderful people on this site so I hope you get the answers you need. I'm not to sure which route is better, I'm kinda new at this to. I see a neurologist who specializes in Autonomic Neuropathy/POTs.

My neck and shoulder get sore when I stand for a long time or drive alot. That is one of the symptoms listed on the homepage.

Dayna

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My shoulders and neck hurt and get stiff all the time also. I've wondered if it's just a POTS things or if it's because of migraines (which are a POTS thing also), where you tend to stiffen your neck and shoulders unnoticable because of the severe constant head pain...

I just got diagnosed in June (because sick for 2 years) at a research clinic (at the Mayo Clinic in AZ) I found they just told me what I had and that was it... I'm trying to find a doctor now who knows something about it... Most important thing for me has been having a doctor who is insterested in HELPING you. AND OF COURSE like everyone says a specialists in POTS is still really important... I'm just yet to find one in my area...

Here is the physician list that is posted... You may have already checked it out but if not, here it is:

http://www.dinet.org/physicians.htm

(I have edited your post to remove the quote of DSM3KIDZ entire post)

Edited by MightyMouse
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Yes, do check the link deeplyset gave you. There is no "best" doctor, asside from the fact that many will tell you that Dr. Grubb is one of the "nicest". There are a number of very good places out there that specialize in autonomic problems, and most of the ones listed on our site have a long wait for an appointment. Most of our members do not have a local autonomic specialist--unless you're lucky enough to live near the ones listed (i.e. Toledo, Cleveland, Nashville, NYC, etc)

Getting adequate treatment for your symptoms can make a differnce in how you deal with your day to day life. I hope you find a doctor to work with you soon.

Nina

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jennifer-

hello & welcome. sorry that you have reason to be here, but glad you found the forum. there is a lot of good info here and great people to go along with it.

re: the "best route" there's not one. this isn't to say there aren't options, just that no one thing works best for all. there are pros & cons, benefits & drawbacks to most options out there and it seems to be a combination of things that works best for a lot of us. have you asked for follow-up suggestions from whoever diagnosed you? i know that some places offer none, but it's always worth a query. over the years i've explored a wide variety of things - inpatient research, autonomic specialists (not research), and non-specialist docs who are just openminded & willing to learn & work with me. all have played an important role for me but some more than others at different times. i'd say it's always a good thing though to have a local doc in your court. he/she doesn't have to be a specialist, but even if you see a specialist it is priceless to have a primary care doc for the day to day ups an downs. this is easier said than done, but worth shooting for.

hang in there,

:-)melissa

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