usports2 Posted May 10, 2011 Report Share Posted May 10, 2011 Evening All!We are new to these forums...our 18 year old was just diagnosed with POTS 3 weeks ago after 21 months of doctors, tests, hospitalizations, and multiple misdiagnosis.I have run across the name of a Dr. Grubb on these forums....with mention he is in Ohio.Can someone tell me who he is, where he is in OH, and what his role is in all of this?Thanks for your insight and knowledge of POTS...we are learning so much from all of you. Quote Link to comment Share on other sites More sharing options...
Kyler Posted May 11, 2011 Report Share Posted May 11, 2011 If you google his name you will find lots of info about him and his life's work. I have only ever heard good things about him but fortunately we have an awesome POTS specialist in Virginia where we live. Good Luck - I'm glad that you finally got a diagnosis. Quote Link to comment Share on other sites More sharing options...
Darlene Posted May 11, 2011 Report Share Posted May 11, 2011 Dr. Grubb his Nurse Practioner, Bev Karabin are like no others! They not only have extensive knowledge and skills, but are the most compassionate medical professionals I have EVER encountered. They spend time listening to you and do their best to help ease your troubling symptoms.http://utmc.utoledo.edu/physicianapp/physingle.jsp?ID=75 Quote Link to comment Share on other sites More sharing options...
55baron Posted May 11, 2011 Report Share Posted May 11, 2011 Dr Grubb, at cleveland clinic, is one of the premier pots doctor and researcher. But you have to wait months and months for an appointment, an I've read that calls aren't returned promptly. You being new to POTS, I remember the confusion, and it doesn't get better for years.... Its on thing after another....Its hard to find a dr who is knowledgable with pots and who can treat and help adjust.Being a 5 year veteran of a child with pots, I found the best info is on support groups like this one. And to sort through the info. Every child with pots is different! different symptoms, slightly different treatments.Remember that.Good luck, and remember, ask every question!!Cathy Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 11, 2011 Report Share Posted May 11, 2011 Hi, sorry, but he isn't at the Cleveland Clinic, he is the University of Toledo medical center in Toledo. It is a few a few hours drive from cleveland clinic. I saw him he is good. He is a cardiologist that is aware there can be non cardio causes for pots. I haven't been back because of the expense to get there, but he got me on the right track and sent info to my cardio. My primary treating doctor though is a neurologist who specializes in autoimmune neuromuscular disease and immune deficiency. As that is the cause of my pots. He was aware of my positive skin biopsy and did agree with that diagnosis. He put me on labetalol and alpha/beta as I am one of those that swings high to low with BP/HR and I get occasional presyncope collaspes. He didn't do any further tests while I was there, but asked the my local doctor do the supine/standing catecholamine blood test. Which confirmed I believe that I was hyperandregenic or a swinger. I triple my norepinephrine on standing.Hint they won't make an appointment until they have your medical records, even though they may not look at them until your actual appointment. Once they have them, call them for your appointment, there will be a long wait, but if you can check in and see if he has had an opening sooner. That is what happened for me, and my appointment was moved up. You know timing is everything. Also his wife is ill brain tumor it's been several years already, her health could effect his schedule. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 11, 2011 Report Share Posted May 11, 2011 If i was in the states Id be seeing this guy! In terms of treatments he is at the forefront. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 11, 2011 Report Share Posted May 11, 2011 I agree with rama. But even though I am not in the US, Dr. Grubb was kind enough to recommend doctors where I live by email. I recommend reading the articles about POTS he has authored and co-authored - they are clearly written and his deep understanding and compassion come through. They are very useful to bring to other doctors who are willing to learn. Quote Link to comment Share on other sites More sharing options...
Noreen Posted May 11, 2011 Report Share Posted May 11, 2011 Brilliant in his field and also a wonderful person. He has written many short stories and anything he writes (including journal articles) is a pleasure to read.to get an idea of him as a person, check out this interview Quote Link to comment Share on other sites More sharing options...
sandymbme Posted May 11, 2011 Report Share Posted May 11, 2011 Just to add my two cents, Dr. Grubb (who as others have stated is at the University of Toledo Heart and Vascular Center at UT Medical Center) is without a doubt the most knowledgeable and compassionate doctor you could ever have the good fortune to see. If only there were more like him! I just saw him last month, and even in delivering some very difficult news his genuine concern and caring softened the blow quite a bit. It is a long wait to get in with him, but you can often see his nurse practitioner, Bev Carabin, much sooner. She has co-authored much of his work, and is every bit as kind. It is worth the wait and travel to see either one of them, because the powerpoint presentation they give about POTS helps you to understand so much better what is happening and why, and your best treatment options. Good Luck!Sandy Quote Link to comment Share on other sites More sharing options...
Serbo Posted May 19, 2011 Report Share Posted May 19, 2011 Does anyone know if a follow up was done to this study br dr grubb?http://www.ncbi.nlm.nih.gov/pubmed/20711750Can't find anything in net, wondered if this sample saw a recovery Quote Link to comment Share on other sites More sharing options...
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