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Who To Contact At Cleveland Clinic?


dizzyblonde
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Hi everyone, I've been diagnosed with POTS for a few months now and midodrine has helped my symptoms to an extent, but I've been feeling like I'd really like to get more of a handle on what might be the underlying cause of my problems. Plus, I have all kinds of symptoms that don't really seem to be controlled by the midodrine (digestive problems, cold extremities, loss of dexterity, etc.)

I guess what I'm hoping for is to get more of an overall picture of what's going on rather than just seeing on particular specialist, but I don't know how to set such a thing up (or if it's possible I guess). For those of you who have gone to the Cleveland Clinic, could you tell me if this is how it works and, if so, how you went about having an overall evaluation? Did you think it was worth the time, money and energy overall?

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Dr. Fouad was the doctor that I saw and she is very good with the TTT and discussing the problem. By the time I saw her, Dr.Coghlan had been treating me for about 20 years and I was on many medication when given the TTT. But her diagnosis was still autonomic nerve disease. My results were much better than before but still not good. Then I decided to see Dr. Grubb and he is now trying to help. She is a lovely person and really does listen. For diagnosis she is a wonderful doctor. Hope this will help. Fell free to ask anything. :rolleyes:

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Thanks for the response, Mary! I've seen Dr. Fouad mentioned in other threads too. Did you just see him when you visited or did you have additional tests done (like immunology or endocrinolgy types of tests)? I guess I'm curious about how POTS is affecting other symptoms or vice versa. How would you compare the Clinic to visiting Dr. Grubb. I'm actually lucky in that I'm very close to both, so I've been debating where I should go first.

Sorry for all the questions! :rolleyes: Sometimes I just don't know where to start with these things.

Dr. Fouad was the doctor that I saw and she is very good with the TTT and discussing the problem. By the time I saw her, Dr.Coghlan had been treating me for about 20 years and I was on many medication when given the TTT. But her diagnosis was still autonomic nerve disease. My results were much better than before but still not good. Then I decided to see Dr. Grubb and he is now trying to help. She is a lovely person and really does listen. For diagnosis she is a wonderful doctor. Hope this will help. Fell free to ask anything. :rolleyes:

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Cleveland clinic is an amazing place. I am glad that I went, because Dr.Fouad is a colleague of Dr. Grubb and we need all the help we can get. But saying that, Dr. Grubb has a special connection with all of us and will give you his all. These are two very special doctors. Since I had Dr. Coghlan for so many years, the TTT was all that was needed for me. All three of these doctors are precious to me. Please ask anything, anytime, Blessings, Mary :)

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I'm headed to CC in two weeks to see Dr. Jaeger and have autonomic testing for 3 days as an outpatient. During this visit I am scheduled to have the QSART, repeat TTT, Hemodynamic Lab work - under fluoroscope, heart rate variability test, and syncope test. I called In November to make this appt. At the same time I called Dr. Grubb's office. That would have been a one year wait so I opted for CC. I'm not sure if Dr. Grubb has a full autonomic lab but I understand from Dr. Randy Thompson in Pensacola there are 5 Autonomic labs well known in the country (not in order) are:

- Mayo, MN

- Cleveland Clinic, OH

- Vanderbilt, TN

- Southwestern, TX

- ??????? - Dr. Kauffman, NY (specializing in PAF/MSA)

I'll try and post an update following my visit to CC.

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