Foxyblue Posted March 3, 2006 Report Share Posted March 3, 2006 Hi everyone. I see this Dr. Grubb's name mentioned a lot. Is he the "ultimate" POTS specialist?B Quote Link to comment Share on other sites More sharing options...
briarrose Posted March 3, 2006 Report Share Posted March 3, 2006 In my personal opinion he's the most knowledgable, compassionate, respected doctor there is. He knows more about Autonomic problems then anyone that I've met so far. I trust him more than some of the researchers, just because he sees Dysautonomia long term and researchers see people for a fragment of time of their illness. Well anyone that has had Dysautonomia for at least a couple of years knows how this illness changes (symptoms.)Dr. Grubb has been nominated top doc in the U.S. more than once. He's done more for my autonomic problems in one visit then a handful of doctor's did in over a years time!He's a gift!Any other questions?Steph Quote Link to comment Share on other sites More sharing options...
Poohbear Posted March 3, 2006 Report Share Posted March 3, 2006 Hi!While I think Dr. Grubb is great, I wouldn't call him the "ultimate" POTS specialist.He is one of the better known specialists though.If you want more info see this link and scroll down to Ohio http://www.dinet.org/physicians.htm#United%20States Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted March 3, 2006 Report Share Posted March 3, 2006 Dr. grubb.. as i was told by my cardio.. is know wolrd wide for his treatment in POTS/dysautonomia.. he is I'd say one of the most sought out dysautomonia docs around.. there are a hand full of a few docs that specialize in treating dysautonomia..people come from all over the country to see him.. as well as from other countries to see him too.....alot of people go to dr. grubb he is very knowledable and also is very kind and compasionate..makes aworld of difference attitude wise to have dealt w/ docs who are so rude and insenstive.. then to go to dr. grubb.. and its like why cant all doc be like him!! he genuinely cares.. and it shows thru in his work and treatment..I call dr.g the guru of dysautonomia.. and in my book he is the "ultimate" pots specialist.. that is my opinion anywasy for what it is worth... Quote Link to comment Share on other sites More sharing options...
michiganjan Posted March 3, 2006 Report Share Posted March 3, 2006 Blair Grubb MD is an electrophysiologist cardiologist at the Medical University of Ohio in Toledo. Many of his patients have POTS. He has had at least one book published, "The Fainting Phenomena" and many articles on dysautonomia. He spends a lot of office time with his patients and is knowledgable in using medications to help control some POTS symptoms. Many people with dysautonomia travel great distances to see him. Myself and some others on this forum are his patients. He is noted for his compassion. One day I was in his office and he had a patient who had come from Africa. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 3, 2006 Report Share Posted March 3, 2006 Dr. Grubb is good but can't help some of us that were sick years before we heard of the guy.As far as ultimate 'POTS specialist..I am not sure there is such a thing.I was talking to a former Vandy pt the other night and while her treatment there years ago, was excellent and helpful, they told her they had yet to see a POTS pt over 50 and thought it just went away with menopause.Nope. Not true. They no longer say that I am told but she WAS told that in the nid 90's... Dr. G told me to expect things to change after menopause, probably for the worst..no way to predict since underlying causes are so complex...so who really knows..... ...it just depends on what some of the specialists can do for individual situations. You will hear conflicting info on ALL the "research centers".Also, many places have different theories and getting the egos left at the door to share and compare notes is not always an easy feat. I had this discussion with Dr. Grubb and he said it was like "trying to convert people to another religion to change their mind about dysautonomia"...I know that went for many centers, no particular one. so that is not bad mouthing anybody or place...just how it is....Dr. Grubb is way too busy for a one doctor ANS specialist so I hope he takes care of himself. I also hope he remains cancer free and learns to take more time off for HIMSELF.It is true many come from all over USA, Canada, UK and as Jan mentioned, Africa to see him. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted March 3, 2006 Report Share Posted March 3, 2006 Sophia,Just to clarify...the comment about POTS not being seen in people over 50 is outdated and none of the top specialists say that anymore. They now know more and know better!! Thank Goodness for that!!!!! Quote Link to comment Share on other sites More sharing options...
Lulu Posted March 3, 2006 Report Share Posted March 3, 2006 i also think dr grubb is the guru of dysautonomia. he *is* very compassionate and so knowlegeable! he has called me HIMSELf at my home to talk to me about exacerbations. the first time i went to him, we waited 3 hours to see him, but then he spent 1 1/2 with me!! how often does that happen? never! he is dedicated and caring and explains everything. some of the stuff he explains i "grock" in the office and then leave and am like, "ok, now *how* did he put that?" he is simply awesome. and his new NP, beveryly is fabulous as well. he has was voted one of the top 100 doctors in the US last year. as has been said, he did more for me in one visit than doctors had done for me for years!with his battles with renal cancer, i pray for his health and strength everyday. he is someone who understands and has insight into what is going on with me. he is a gem. has anyone ever seen/bought his book?i'm a dedicated follower of Dr. Grubb, and I've also seen Dr. T-A in his office, too. Dr. T-A was also compassionate, knowledgeable and kind. The first thing he said to me tho, was, "I'm not the guru, I'm just a disciple." but he did fine and i got good treatment. They have a great staff, too! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 3, 2006 Report Share Posted March 3, 2006 THough he is now dead, the late great Dr. Streeten came OUT of retirement to study dysautonomia and chronic fatigue links. He was so fascinated because he had found many pts of his to have delayed fatigue and delated orthostatic issues.Linda Smith of NDRF, told me he was known as the father of dysautonomia. He studied it for years and was very compassionate as well. A sweet, gentle man whose likeness was, thankfully, recorded on the ndrf conference tapes. He was amazing.Dr. Grubb has the same gentle manner. There is a very old, now out of print book, by Dr. Streeten I read through years ago. When a friend of mine worked at a nearby hospital, he got it from their medical library. It was interesting to read but didn't have much about POTS per se.But he was another one that spent lots of time with a patient. And he was ahead of his time on dysautonomia, a disorder few doctors cared or had the patience to research.Here is a link that tells about Dr. Streeten.http://jcem.endojournals.org/cgi/content/full/86/2/471 Quote Link to comment Share on other sites More sharing options...
gwen Posted March 3, 2006 Report Share Posted March 3, 2006 amazon.com has two of his books for sale on web site. Quote Link to comment Share on other sites More sharing options...
briarrose Posted March 4, 2006 Report Share Posted March 4, 2006 Once again in my opinion, there aren't any doctor's that have gone to school to become an autonomic specialist. They don't teach it! The Autonomic doctor's in America are either researchers or have decided to take on autonomic issues. Ask any of the docs and they will tell you there is no money to be had in taking on these kinds of patients. There are only a handful of autonomic doctor's in the World. Based on that, Dr. Grubb is the best of his kind and people do seek him out from all over the World. Dr. Streeten was a good friend of Dr. Grubbs.Dr. Streeten also worked with Dr. Bell (a chronic fatigue specialist)http://home.tampabay.rr.com/lymecfs/hypovolemia.htmDr. Bellhttp://www.anapsid.org/cnd/diagnosis/oi.htmlFiguring it all out http://www.ncf-net.org/forum/orthostatic98.htmCFIDS New Mechanism Found, Treatment Triedhttp://www.ncchem.com/cfids_new.htmother good articleshttp://www.ahummingbirdsguide.com/wbell.htmIsrael is the place where Dysautonomia is the most heard of because for some reason it's said to be inflicted on high numbers of Jews, even with that they don't seem to be advertising any top Autonomic Guru's. Quote Link to comment Share on other sites More sharing options...
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