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Author
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Comment
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bconley
Unregistered User
(3/1/04 1:07 am)
Reply
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fmd
Hi,
Oops! I gave the wrong e-mail address. I don't want to be left out of the count. That's berthaconley@aol,com.
Please include me.
Thanks,
Bertha
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KaPage
Registered User
(3/4/04 11:52 pm)
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FMD Study
I am interested in participating in the study. My email address is pstowe@sitestar.net. Also, does anyone know of a doctor or hospital in Virginia or North Carolina who knows anything about FMD? I was diagnosed in August 2003 after suffering a stroke, secondary to a vertebral artery dissection related to FMD in my vertebral arteries. My right vertebral artery is 100% occluded, and I was told that the left artery shows "some narrowing." Ultrasounds and studies in August did not indicate involvement with any other arteries, i.e. renal, coronary, etc. I just turned 38 years old; I am married with two teenage children. I had a fast, complete recovery from the stroke, and I am doing very well on Coumadin and Aspirin therapy. Other than being a little overweight, I am healthy...I'm a nonsmoker; no hypertension; no problems. However, I am very paranoid about my future with this disease. My neurologist is great, however, he has been very upfront in that he doesn't have a lot to offer due to the fact that there is very little medical documentation on the longterm treatment of FMD. He has mentioned "tapering off the Coumadin", and quite frankly, this frightens me. I have had headaches as long as I can remember; these were very severe prior to the stroke, and since the diagnosis and the Coumadin therapy, I have had very few headaches (the occasional headache has been mild.) I can't help but feel that this improvement has been due to the medication. My medical doctor has suggested that "in my search for information" I search for a medical institution that has performed some studies of FMD and request a second opinion. I live in Virginia, near the North Carolina border...I'm hoping to find information from Duke University Medical Center or Wake Forest Medical Center in North Carolina, or UVA or MCV in VA...somewhere within a reasonable driving distance from my home. Any suggestions????
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fmdq
Unregistered User
(3/6/04 12:46 am)
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Welcome to the site
First, yes, consider the Coumadin withdrawl. Sounds like you are gathering the information that you need to look at a healthy future. I dont know about North Carolina as a source of medical care regarding FMD. I would recommend that you check into places like Johns Hopkins in Baltimore and University of Maryland. The Neurology staffs there are well versed with FMD and alternative treatments other than Coumadin.
Would you post your "story" in the part of the site called "FMD around the World"? There may be others there and if not, others can find you and information can be shared on specifics.
There are alot of links here for you to review the meds that you are on and comments on treatments. The bottom line is to do what you think its right for you. I am a Johns Hopkins patient myself. So far, I have not needed radical intervention, hope it stays that way, but they see FMD quite a bit and deal with it daily.
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