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Darlene
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Dr. Fouad, an EP, diagnosed me there last year. She is good, but really busy and I just have so many unanswered questions. I made an appt with her for this September. During my TTT, I didn't have any blood drawn and I've noticed that other posters have had catecholamines etc. done during the tilt, and I didn't have any of that. Maybe it wasn't warranted, I don't know. But over all, I felt I was in good hands.

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I go to the Neuromuscular Center/Neurological Institute at Cleveland Clinic. I see Dr. Robert Shields, Co-Director for Syncope & Autonomic Disorders & Director of Autonomic Laboratory for my dysautonomia/neuropathy. I just love him. He is very compassionate, caring and spends a good hour or more with you. He is hard to get into to see-right now about a 4-6 month waiting list to see him. You may want to make an appointment with a fellow Neurologist, who consults with him. I got an appointment in about a month with a fellow Neurologist who consulted with Dr. Shields and met Dr. Shields on my first visit after the fellow Neurologist evaluated me. He spent at least an hour with me after spending almost 2 hours with the fellow Neurologist. I have been seeing him ever since-on a 3 month basis. He also gets back to you quickly by phone. He encourages phone calls and questions.

I would highly recommend him.:)

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Here is Dr. Robert Shields phone numbers & address:

Address:

Neuromuscular Center

Neurological Institute

9500 Euclid Ave. Desk S90

Cleveland, Ohio 44195

Phone:

Tel (216) 444-0855

Appointment (216) 636-5860

or (800) 223-2273 x40855

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I wasn't impressed. They are too busy and would never return my phone calls. After the first TTT, I was supposed to go back and have more autonomic testing, but it took them 3 months to send out my report and at that point, I was so agitated with their follow up care, I see no reason to go back.

If you want more details you will have to message me. Would I recommend a friend go to them? No.

Dr. Fouad, an EP, diagnosed me there last year. She is good, but really busy and I just have so many unanswered questions. I made an appt with her for this September. During my TTT, I didn't have any blood drawn and I've noticed that other posters have had catecholamines etc. done during the tilt, and I didn't have any of that. Maybe it wasn't warranted, I don't know. But over all, I felt I was in good hands.

I had to ask for them to be tested otherwise they weren't going to do it. Thank goodness I did because mine were elevated.

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Dana,

I'm so glad you said that. I wonder if I might want my primary to give me a referral to Dr. Grubb. I don't think we should have to ask for our own tests; I mean, aren't they supposed to know this stuff??? Anyway, it's good to have these opinions because I left feeling like maybe something was missing. I do not enjoy having to diagnose myself.

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I went to CC and would suggest you see Dr. Grubb. (Hopefully I said that politely enough.)

Babette

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I should add that I didn't see Dr Shields or any of the neurologists so I have no opinion on them. I saw a cardiologist.

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Polite indeed, on both counts! My problem is that I don't want to waste Dr. Grubb's time because so many other people have worse symptoms than I do. I had a really rough weekend with a bit of a relapse and I do want to discuss it with someone, but I don't know who exactly. Or if I should be seeing a neurologist instead? I'm so confused...

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