Heads up everyone - check in

FMD Vascular > General Topics > Heads up everyone - check in
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Linda Unregistered User (10/2/03 8:10 pm) Reply	White matter damage and FMD of carotids Rich, Thank you for your interest and research on White matter changes in the brain. I had not seen that article. I have none of the risk factors mentioned. I will be 54 this month and my white matter damage was discovered two years ago, when they found out I had FMD of the carotids. My MRI's of my brain have been reviewed by several Radiologist and they all agree it looks like white matter changes caused by the small micro arteries that fed the white matter. None of the doctors have an explanation as to why I have it or if it is related to the FMD. (I suspect it is since I have no other risk factors and I am really too young for these changes.) I do not have FMD in my renal arteries and I have never had high blood pressure. I would very much like to know if others with FMD of the carotids are getting MRI's of the brain and if they are showing white matter changes. (These are not considered stokes.) Like everyone else, I wish more research was done on this disease. Just collecting the data on all of us might shed more light on this disease. I believe very little has been learned by the medical field since 1968. I have another MRI scheduled on the 15th of this month. I really expect it not to show any increase in the white matter damage since I have been on plavix and asprin this year. Again, thanks for your interest. I have written about this before in the other FMD group and never got a reply. As scary as all this is, I would still rather know all the facts. I did have a Pet Scan and I have no signs of early dementia. Linda Pizer Arkansas
Barbj Registered User (10/11/03 5:03 pm) Reply	Re: White matter damage and FMD of carotids Hi! I'm new to the site. I have just been diagnosis with FMD. The sad part my mother had when she was 27 (now 61 doing well). My blood pressure started acting up in 1998. My ob gave me a lower dose of birth control. Got pregnant. At my 7 mo check up blood pressure was way up (bed rest) baby was not growing. 9-99 Gave birth a week later (1lb 15oz 9 wks early, doing great). Since have been on blood pressure meds. Told first primary doctor of mother FMD and my dad heart by pass 6 blockages. Never did anything. Second Primary put me on my second med. Been on two meds for the past 3 yrs. This july started to have bad headaches. Work for a peds office. Nurse took bp 150/108 on two meds. Went to doctor. Said bp up due to headache induce. Explain that since May 03 gain 15 pds (have hypothyroid). Doctors comment "haven't we all" she was pregnant. Said I was having a tension headache gave me script. Said she see me in 3 mo. Kept having headaches. Week later just didn't feel right. Bp lower number up again. Went to doctor. Worse visit I have ever had in my life. Explain that previous week forgot to tell her that when I have headaches my tongue was tingle. Said I was hyperventaling (spelling????). Started to cry explained I was scared, brought up my parents history. Actually yelled at me. Said fine I will increase your second pill to 50mg from 25mg. But now you will probably bottom out. See you in 3 months. Well to end the story I have a new primary. Who listens and sent me for ct scan (brain) and MRA. Newly diagnosis on Monday FMD of the renal arteries. See Cardiologist on Tuesday. I am 41yrs and very relived that its possible I will be off my bp meds.
fmdsucks Member (10/11/03 5:32 pm) Reply	barbj gosh Barb I'm soooo glad you switched primary's ... the old one ought to be shot! I'm sorry you had to go through all of that just to be sure your own instincts were right on from the begining. I hope all goes well for you from here on in... have a great evening.. gina
itstessie Registered User (11/1/03 4:24 pm) Reply	Carotid FMD in Colorado Hi, all, I'm here, too :-) My FMD is 50-60% stenosis in right carotid, 10% in left. I was having a window-shade vision loss in my right eye. I'm not too keen on my neurologist -- he suggested that, because I had't had a stroke, my symptoms might be psychological. Whew, I'm a fairly well have-it-all-together person, I wasn't expecting that. Fortunately, I have a friend who is a neuroradiologist, Harvard and Mass General trained. He is guiding me through this. I'm a great researcher, by the way. If you wonder if some little tidbit about FMD is out there, let me know and I'll look for it. Right now, I'm trying to find out its course of progression. I'm so glad to know you all. Teresa in Colorado
fmdsucks Member (11/2/03 10:59 pm) Reply	fmd Hello Teresa, nice to hear from you too! I think ant tidbits of info would be greatly appreciated... especially since you never seem to get a straight answer with this disease.I too have fmd of carotids but 60 on left and 40 on right... been through a bunch of tests and angio's x2. Feel free to write me anytime...have a good night ,gina
Betty Lecat Registered User (11/13/03 8:41 pm) Reply	Re: fmd Hi! My name is Betty and, although I've been a member of both this site and the other FMD site, I've just...just..."ignored them". And I shouldn't. Those of us diagnosed with FMD (of WHATEVER arteries), and could not rec the info from Drs that we needed turned to the internet. Very little out there when I was diagnosed in '91 (bilateral renal artery FMD with multiple aneurysms)...I looked and looked...wanted a "prognosis", but...no answers. Slowly but surely, after posting questions on a few medical boards, other FMD'ERS (as I refer to us) began to respond... And now look where we are, compared to then! There is a University in New York interested in those of us afflicted with this STUPID disease...We need FMD'ERS to sign up for this! It's OUR chance to be heard...to help put this disease on the books...I'm somewhat (?) "computer illiterate", but understand there are two websites dedicated to research for those of us with FMD...if you happen to be reading this, and have any questions, pls just post a message, and an answer as to how to participate in this questionaire (a University out of New York City) will be posted...if already not done. Thanks for listening. Betty
rufus Unregistered User (11/25/03 10:11 am) Reply	I too have FMD I WAS DIAGNOSED IN I999 AFTER AN ANGIO FOR SEVERAL STROKES---BOTH INNER CORORIDS HAD TO BE REPLACED AT THE MAYO CLINIC IN ROCHESTER,MINN.-NOW MY RENAL ARTERIES AS OF LAST YEAR WERE AT 20% CLOSED-HAVING DIAGNOSTIC ANGIO NEXT WEEK IN DENVER-UNIVERSITY HOSP.TO CHECK MY WHOLE BODY OUT --HOPEFULLY STENTING WILL BE SUITABLE FOR THE PROBLEM I'LL KNOW WITH THE ANGIO SHOWS---GOD BLESS ALL OF YOU--RUFUS
reneeowens3k Unregistered User (11/27/03 11:04 am) Reply	FMD I have FMD in the renal arteries. Balloon angioplasty did help and now my blood pressures are more normal. I do have an aneurysm on one of the renal arteries, but it is too small to do anything about right now. Does anyone have or know of someone who has FMD in the coronary arteries?
Judy Unregistered User (1/5/04 11:29 am) Reply	FMD with Mitral Prolapse I was diagnosed with FMD with obstruction in both carotid arteries two years ago. I also have mitral valve prolapse with regurgitation and mild aortic regurgitation. I have found that this is a lonely disease. Most doctors don't know much about it.
Betty Lecat Member (1/12/04 7:25 pm) Reply	RE: RUFUS AND MAYO CLINIC Just checking in to see how we're all doing... Rufus, how did it go at Mayo Clinic? Betty
Vee Unregistered User (1/14/04 11:28 pm) Reply	FMD $:\$ I have FMD. My primary discovered it during a routine exam with the stethoscope at my neck. He ordered an MRA and then sent me to OSHU to see a specialist. He asked me a bunch of questions and then said he wanted to "watch" it. He asked that I get another MRA and ultrasound in 6 months. I have not had any other symptoms of any kind except what my primary Dr. discovered. When the specialist showed me the pictures from the MRA I saw the area that was narrow with a little "bubble" before it on both sides of my neck. I have not had the angiogram or any other tests but the ultrasound and MRA. I am 51 and thought I was pretty healthy. Now I feel doomed just waiting for a stroke to happen.
gguess36 Member (2/22/04 8:14 pm) Reply	Re: fmd Hi Betty, Is it too late to get involved in the study. I was diagnosed with FMD in renal artery with aneurysm in October after suffering for years with uncontrolled high blood pressure. I am trying to learn more about the disease. Thank you for any assistance you can give me.