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Author
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Comment
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Celeste
Unregistered User
(11/13/03 4:09 pm)
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We need a head count! Numbers matter, remember that.
I am a faculty member of the Cardiology Division at State University of New York at Upstate University Hospital in Syracuse, New York.
Together with Dr. Hani Kozman (Director of the Cardiac catheterization laboratory), we suspect that there might be an association with a particular cardiac disease in patients with fibromuscular dysplasia.
We would like to know if you and the group would be interested in participating to address this issue.
What we would be looking for specifically is that all the participants of your group would answer a questionnaire. Each questionnaire would be analyzed and specific patients would be contacted to answer more specific questions and provide further data.
We believe that there is an important issue that we as cardiologist should address in patients with fibromuscular dysplasia.
Hope you and your group would be willing to participate.
Sincerely,
Jose F. Huizar, M.D.
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chindor7
Unregistered User
(11/14/03 5:15 pm)
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FMD
Most patients with FMD have renal stenosis. In my case, I have bilateral carotid stenosis- 100% stenosis on the right and 80% on the left, both vetebrals are also effected at 25%. It took the medical staff 2 wks to diagnose this disease, in the process I developed 2 cerebral hemorrhage and scattered infacts throughout my brain. I truly believe stroke patients are afflicted with this disease, but have gone undiagnosed due to the lack of information. Why FMD was never suspected in a previously healthy adult with complains of headaches, nausea, vomiting and neck pain when the lumbar tap revealed minimal cells?? I am interested in this study as all FMD patients are high risk for strokes and aneurysms.
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Linda
Unregistered User
(11/15/03 2:02 pm)
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FMD
When I read post like yours, I get so upset that the research articles out there down plays this disease so badly as an incidental finding that usually causes no problems. Thank you for sharing it reminds me that I am at risk for stroke just by having this disease. I have a 70% blockage in left and 50% in right internal carotid arteries from FMD. I also have FMD in my right vertbral artery. My left vertbral is just small and doen't carry a lot of blood.
Linda Pizer
Arkansas
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gguess36
Registered User
(2/22/04 7:59 pm)
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Re: We need a head count! Numbers matter, remember that.
I am interested in participating in the study. I was diagnosed in October with FMD in renal artery, also aneurysm after many years of unexplained high blood pressure. Is it too late to get involved?
Edited by: gguess36 at: 2/22/04 8:20 pm
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Mimi
(3/27/04 11:17 pm)
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study
hope it is not to late to count me in. I replied once to this...but have been having problems navigating the site...but am gettin better  thanx
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Betty Lecat
Member
(6/24/04 5:21 pm)
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RE: joan rochelle's post
Joan...I hope you read this...
I just read your post!
What are you doing for yourself?
will you share latest with us?
Thanks so much...
Betty
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