Dysautonomia (Autonomic Dysfunction) Community
Help for Dysautonomia?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Help for Dysautonomia?

Hi, I'm new to this forum. I'm on here to try to find help for my husband. He was diagnosed with dysautonomia a couple of years ago at Vanderbilt. He has not been able to find relief though. He suffers from Potts, chronic fatigue, various aches and pains, hyper and hypotension, depression, numbness of extremities, and a few other symptoms. He's tried a TON of medicines, vitamins, lifestyle changes, and basically anything you can think of. Is there a specific doctor who has been able to help any of you that you would highly recommend? We are willing to travel anywhere to get him treatment that will actually work. Thanks! :)
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967168_tn?1343732745
What about Dr. Blair Grubb in Ohio?  I know there are those of us who have used him here as well as another popular Dysautonmia forum.

The biggest problem is he has a long wait time sometimes 6months - 1year.
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Avatar_f_tn
dr blair grubb, he is the leading physician in that field.  he is my dr and i have every symptom of your husbands, i was at the point of giving up, i was so sick and noone could figure out why untill i went to dr. grubb... he is the most caring and knowledgable dr, i love him.  ii cant say im feel completely better but he is working closely with me trying different meds to at least get me to where i can function normally.  the only bad thing is it takes like a year to get into him so hurry and make an appt.  hes at muo, cardiology clinic.  4193834000, thats the main # just ask to be transfered to cardiology then ask them what u need to do to see him... its worth the wait
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612876_tn?1355518095
Dr. Grubb is an excellent suggestion if POTS and/or syncope is the primary concern.  If there is question as to whether the diagnosis from Vanderbilt may have been incorrect, the one problem I will mention with going to see Dr. Grubb (aside from his long waitlist due to his well-earned popularity) is that he is not located at one of the major dysautonomia clinics, so he does not have access to the same testing facilities that are available at Vandy, Mayo, Cleveland Clinic, etc.  

Thus, if you are interested in great part in pursuing further autonomic testing, I would lean more towards recommending a comprehensive workup at Mayo or Cleveland Clinic.  Please realize that only Mayo's Rochester location has their full autonomic clinic and only Cleveland Clinic's Ohio location has their full autonomic clinic; these are also the locations where their top-published/most-renowned specialists work, for whatever that is worth.  One thing to note with Mayo is that they do turn some patients away, so to have the best shot of getting in, make sure you wisely select which of your physicians you ask to do the referral if you try to get in there (someone who really is on top of the game, so to speak, and can really advocate for you).  I haven't heard of Cleveland Clinic's autonomic/syncope clinics turning people away in that manner, per se, but still be aware that you will need a physician referral.

Again, if you're not wanting to go for a comprehensive workup (which you very well may have already had at Vandy, depending on what their thoughts were at that time), it may not be necessary (or desirable) to go for Mayo or CC and Dr. Grubb may be a better option for you.  He is known by most of his patients for a better bedside manner and better follow-through (though no doctor is absolutely universally beloved, of course).  We have also heard positive reviews from the autonomic clinic at Case (University Hospitals) in Cleveland, OH, although primarily we've heard of pediatric patients going there so I can't speak much to their quality of care with adults.

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My son initially saw the Dr's Chelimsky(husband/wife) at Case Western University in Cleveland.  They were great, but they are leaving in December to go to Milwaukee, WI.  I don't know about the other doctors at Case Western.

We are headed to the Mayo Clinic in Rochester next week.  I will report back on how that all goes.  While my son has had all the autonomic testing, he is still a very sick child (if you can call at 6'2" boy a child!).

Christy
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Avatar_m_tn
What kind of testing do they give you.
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