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Old 05-14-2007, 04:02 AM #1
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Default Suggestions please........

Better late than never, I guess. Recently due to sub-standard care received, I've decided to go on a "pilgrimage" for a second opinion. Between the MS (?), Fibromyalgia (?), Lymph edema (?), Osteoarthritis (?) -- so many of my symptoms run together. What do I actually have and can it be treated better than I'm currently experiencing???

So......does anyone have any experience with the following places: Cleveland Clinic, Johns Hopkins or the University of Pennsylvania? No matter where I go, help will be needed getting there so the longer trip to Maryland or Ohio doesn't matter.

There seem to be so many "odd" things going on and being there are no MS Specialists/Clinics in this area, I'd like another opinion. People have told me that a teaching hospital is usually better for thoroughness. Perhaps there's something out there that could possibly make my so-called "golden years" a little easier with less pain.

Thank you soooo much for any suggestions you might have to share with me.
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SPMS -- FIBROMYALGIA -- Ouch! and Ouch!
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Old 05-14-2007, 11:10 AM #2
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I was sent to Johns Hopkins for a second opinion on my illness. I was very impressed with my doctor; John Iraini.---CRS---that may not be the correct spelling of his name.

Anyway, they did a thorough exam and did confirm that yes I have MS and wrote a detailed report confirming so. Much time spent in the exam room and I didn't feel rushed.

IMO from what I went through your long-term care wouldn't really be addressed since you wouldn't be going there again. Just my experience.

Take care.

If we live in Western PA there is a good MS Clinic in Pittsburgh. I see Rock Heyman; exceptional doctor who takes time with you and listens then gives his feelings. 24/7 answering service and during their operating hours M-F you can get in touch with his nurse.

http://www.nationalmssociety.org/sit...ment_locations

Last edited by 0357; 05-14-2007 at 03:46 PM.
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Old 05-14-2007, 01:47 PM #3
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Default Cleveland Clinic - Mellen Center for MS

When I lived in Ohio, until Jan '05 I was a patient at the Cleveland Clinic Mellen Center for MS. It's a multi-story building devoted entirely to MS patients. A couple times I tried neurologists closer to home, but when I stumped them, they sent me back to the Mellen Center.

My doc was Lael Stone. She's awesome. She was easy to talk too and was always searched for alternative meds that might help me. I am very sensitive to meds and had side effects at low doses, so I was a frustrating patient for her.

If you call you probably won't get a choice of docs, but they are all good. The MS nurses are the best too. Even their secretary's seem to know you and are most helpful.

Much luck with your quest for answers and relief. Hugs of love.
Beth
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