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Posted

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.

Posted

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.

Posted

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

Posted

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.

Posted

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.

Posted

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

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