Heads up everyone - check in

FMD Vascular > General Topics > Heads up everyone - check in
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Celeste Unregistered User (7/21/03 1:14 am) Reply	Heads up everyone - check in Some are checking in through EMAIL and others are simply visiting to read. Its been a busy summer, I know, but there are new people diagnosed with FMD who need your support and input. Some of us out there have new information perhaps? Lets share it. Just enter a line and be counted. Celeste
smudge Registered User (8/3/03 4:24 pm) Reply	hello In response to Celeste's message, I am checking in! I found this site surfing to find more about FMD since my sister has just been diagnosed with it. And I was amazed to find an article here on Mitral Valve Prolapse and IBS, both of which I have. I have a few simple questions - my sister has had various angioplasties - is there any other treatment for FMD? So far they have just found renal artery stenosis but she has had scans to look for this elsewhere in her body. And, is mitral valve prolapse directly connected with FMD?
me Unregistered User (8/5/03 7:08 am) Reply	new diagnosis I was recently diagnosis with FMD, my right carotid artery is 100% closed and the left shows signs of narrowing. Luckily, the vetebrals are functioning. I tired easily and experienced pressure throughout my head. Any ideas to deal emotionally with this?
FMD Unregistered User (8/6/03 12:51 am) Reply	Emotional dealings Your question, how to deal emotionally with the issues of FMD is a good one. I would say, how you deal with the emotional aspect of being ill, totally depends on you. Speaking from my own experience, I set myself a schedule, first, see the best medical help I could find in my area; get a second opinion; have the angioplasties as necessary; and move along to the next issue of repair if needed. Secondly, I chose to receive acupuncture and massage therapy as well as reviewing herbal medicine and vitamins to help the blood flow. Because, like you, I feel tired and canot walk every day nor work out without losing many days in bed, I do what I can, slowly, and stop for breaks. Finally, I meditate and talk to others who are in the same position, not to compare, but to see how they are dealing with similar issues and learn from their experience. The difference between us with FMD and those who dont have FMD, is that we have been diagnosed and they have not. Many women (and some men) are not aware of FMD and medical people dont regularly test for it, so people are out there with the symptoms we have wondering what the heck is going on. I have multiple opthalmic aneurysms and multiple mini aneurysms in the renal artery as well as carotid and iliac FMD. Yes, its there, but I have to enjoy every day and live as well as I can with the limitations I have. I do not chose to give my days to an illness that will eventually take me. That is how I deal with it emotionally. Great sunrises and great sunsets; beautiful smiles, trees, sky, people, family, me...all of it...smell it, touch it, love it, see it all. Alas, our life contract did not say we would live forever, so why waste the how we live today. Keep talking about how you feel, it eases the soul and gives you joy.
FMD Unregistered User (8/6/03 12:54 am) Reply	mitral valve prolapse Humm, interesting point. I dont know if others have this issue and if its FMD related, but I have mitral valve prolapse also, I would have to look at my medical records to verify and will let you know. I recall setting a poll up on similar health issues in the Yahoo site and it included many things but not this one. Perhaps you should set a poll there and ask everyone and then post it here for others. What do you think?
fmdsucks Member (8/6/03 8:12 pm) Reply	fmd of carotids Hello My name is gina and I too was recently diagnosed with FMD of the carotids and am awaiting my next angio to check other areas... what fun! I'm wondering how they found yours and what tests they performed to diagnose you? I too tire easily but my left carotid is 61% blocked, and the right is 41%. To be honest no one has yet to actually tell me what this monster entails but I live for one day @ a time!I recently was put in touch with a doc who is affiliated with Johns Hopkins Hosp. and he said this doesn't have to be a death sentence??!!He was the only doc of many to say that .I haven't scheduled an appt yet but am in the process I will keep you in my prayers...any info is appreciated!Thank you!
Rick Unregistered User (8/10/03 12:41 pm) Reply	Interesting article,possible connection? www.musc.edu/bmt737/Spr_1...index.html
FMD Unregistered User (8/10/03 10:45 pm) Reply	FMD Sucks Who are you in touch with at Johns Hopkins?
fmdsucks Member (8/12/03 10:36 am) Reply	doc affiliated w/ Johns Hopkins Dr. Christopher Stone is who I am making an appt to see sometime in the next few weeks... what's your story if you don't mind me asking??? I only ask because I am interested in this lovely disease. thanks, gina
deanab Unregistered User (8/27/03 7:01 pm) Reply	checking in... Hi - i am also checking in. i was recently diagnosed with FMD and had my first renal angioplasty on Friday (8/22/03). i am wondering what to do next? i having been reading so many posting on this site i am more scared and confused than ever. i have noticed a lot of references to john hopkins in MD - i am from the Boston area but i would travel anywhere to get some more answers. i can see this will be a learning process... take care everyone
fmdsucks Member (8/27/03 10:25 pm) Reply	new Hi I too have fmd and it's in my carotids if you look back on this page you will learn some of my story... tell me how they found yours and where is it? Umm.. I'm visiting a doc that is affiliated with Johns Hopkins on wed the 3rd of Sept. I'll let ya know what I think and what he says...Hang in there take each day for just what it is! Gina
deanab Unregistered User (8/28/03 6:22 am) Reply	new to FMD Hi Gina - thanks for the info. It is great to have a place to go to talk about this... I am 33 years old and have had high BP for about 3 years. I finally found a primary care doctor who wanted to investigate why. An MRA showed stenosis in both renal arteries. I was then referred to a kidney doctor, who referred me to a vascular surgeon at Beth Israel in Boston. The balloon angioplasty seems to be a "success" - no meds for a week now and my blood pressure is staying down! I have a follow up appointment on September 2 and am trying trying to organize all my questions... How was the FMD found in your carotids? I am thinking (from what I have read) I should have mine checked as well (?) Good luck at Johns Hopkins on the 3rd! Deana
fmdsucks Member (8/28/03 12:13 pm) Reply	fmd deana, my fmd reared it's ugly head on fathers day of this year ... my blood pressure shot up to 242/140's no wonder I was feeling soooo tired and crappy. From thre they suggested I see a pulmonologist and a cardiologist. The pulmonologist found nothing... but upon examination my cardio guy heard a bruit (brewy) and knew something wasn't right! So now here we are . One angio down and one coming up(sept 23rd) I've had dopplers and ultrasounds and MRI/MRA's and it's for sure ! FMD! I wish you well and will let you know how my visit and the next angio turn out.. take care, Gina
bconley Unregistered User (8/29/03 4:33 pm) Reply	fmd Hi, Bertha checking in. We are all in learning and searching mode. For those of us new to this THING, we can keep searching, networking and praying, not necessarily in that order. I had a bad migraine last night that sent me to the ER. My neuro will see me Thursday. I had to miss my appt. with the geneticist but will reschedule. I'm tired or I would contribute more. Will keep in touch. e-mail berthaconley@aol.com Hang in there everybody. Bertha
JoniPabst Member (9/10/03 8:56 pm) Reply	Arizona checking in Hello to all! It is wonderful to see some familiar names on line and new ones as well. Now that summer is over, I'm hoping to be more faithful at checking the site for news. My headaches have really increased over the past week so I will be checking in with my neurologist and neurosurgeon tomorrow. The last MRI indicated that the 3rd brain aneurysm is growing beyond the surgical wrapping and clipping and I wonder is the stabbing pains are related. Never a dull moment with this FMD. Take care to all and God bless each of you. My email is jp0808@aol.com Joni
laura Unregistered User (9/12/03 4:23 pm) Reply	newly diagnosed hello, i am newly diagnosed and am glad i finally found something on internet. not much out there! i was diagnosed by accident when a blood clot was discovered in my superior mesentary artery...fmd the cause. they were unsuccessful in disolving the clot looks as though fmd is present there...renal artery and the aorta. i am scheduled for an mra of the brain and carotid ateries next week. yesterday i was told by the neurologist that i have ms as a result of the mri i had 2 weeks ago...my questio to him was could the lesions discovered (only 2) be fmd instead of ms. he agreed to postpone treatment for ms until i get the mra done has anyone out there had neurologic problems due to fmd? reading the limited info out there, i kinda wish it was only the diagnosis of ms....and no fmd. laura
Linda Pizer Unregistered User (9/19/03 9:50 am) Reply	White matter damage and FMD of carotids Laura, I also have white matter damage on my MRI's of my brain. I have been tested for MS and vasculitis, both of which I do not have. I do not have FMD in renal arteries, only both internal carotids and right vertebral. I am not diabetic. I do not have high blood pressure and have never had it. It was decided the white matter damage is from small micro arteries in the brain. This type of damage can lead to dementia. I have had pet scan and I do not have that yet. They do not know what caused this white matter damage since I have no other cause other than FMD. I am on plavix and asprin. I hope you find out exactly where your White matter changes are and let me know if it is similar to mind. Yes, it is very scary. Linda Pizer
fmdsucks Member (9/19/03 8:24 pm) Reply	fmd and white matter Hi, I have FMD of carotids and recently went to see a Dr. Christopher Stone out of Kenosha Wisconsin. Upon visiting him he explained to me that usually when there are aneurysms and other types of brain damage the person usually has another underlying cause?? I myself don't know what to think but does anyone have serious memory issues?? short or long term? By the way Dr. Stone did mention that the stints and screens eing placed in arteries aren't holding up so well ... does anyone have any experience with these? I wish you the best of luck! and I'll say prayers! thanks... Gina
llshat7239yahoocom Unregistered User (9/22/03 4:03 pm) Reply	checking in Hi, I haven't seen postings on general email recently, so am checking in here. I was gone for two months taking care of mother after surgery. Just tried emailing as haven't seen any messages recently and don't think it went through. I had a question; think may have seen some reference to this in past messages, but will ask again. I have renal FMD known and resultant hypertension. The angioplasty didn't correct the htn, and when BP goes up to 170-180/110 say, I feel not well. Feel shaky all over, espc hands shake. Does anyone else have this type of episode? Thanks for any reply. Sincerely, Linda
fmdsucks Member (9/23/03 10:18 am) Reply	shakiness Linda, First I hope you're on medication for blood preesure issues! if not you need to run and get some now! and if you are on meds they need to be re adjusted ... the b/p shouldn't go that high! you could have a stroke... please check that out... have a great day!
Rick Unregistered User (9/28/03 10:07 pm) Reply	Article on brain white matter Changes In Deep Brain Tissue Signal An Increased Risk For Strokes DALLAS, July 18 � Changes in the brain's white matter, a common occurrence among the elderly, increase a person's risk of having multiple strokes, according to a report in today's rapid access issue of Stroke: Journal of the American Heart Association. White matter is the inner part of the brain, through which most of the brain's nerve connections pass. Leukoaraiosis � the scattered loss of white matter in the brain � is particularly associated with strokes caused by blockages in small arteries deep in the brain (lacunar strokes). "These small strokes can be devastating when they hit strategic connections," says lead author Jonathan Y. Streifler, M.D., director of the Neurology Unit at the Rabin Medical Center Golda Campus in Petach-Tikva, Israel. This is the first long-term follow-up study investigating the development of leukoaraiosis and patient prognosis, Streifler says. The research, a substudy of a large international study, found that people who develop the condition were 1.5 times more likely to have a stroke than people without the condition and almost twice as likely to have more than one stroke. "Patients who developed leukoaraiosis were more likely to have multiple strokes, which generally lead to increased disability, both physically and mentally," Streifler says. He and colleagues studied 685 patients with carotid artery disease who participated in the 2,885-patient North American Symptomatic Carotid Endarterectomy Trial (NASCET). The participants ranged in age from 34 to 84. Only those with a follow-up computed tomography (CT) scan taken three years or more from entry were included in the substudy. Although the multicenter, randomized study began in the United States and Canada, it was later expanded to other countries, including Israel, Australia and several in Europe. Previous findings from NASCET showed no link between leukoaraiosis and the severity of narrowing of the arteries supplying the brain, Streifler says. However, a recent study by the authors identified the presence of leukoaraiosis (observed at a baseline CT scan) as a risk factor for stroke and death from vascular disease, including heart attack. "Leukoaraiosis is frequently found by computed tomography (CT) scans in elderly patients, particularly those with dementia or a history of stroke or hypertension," Streifler says. "Yet little is known about its development and progression, or its underlying mechanisms and risk factors." Of the 685 patients at entry in the study, 596 had no leukoaraiosis and 89 had limited white matter loss when they entered NASCET. During an average follow-up of 6.1 years, 18 percent of the 596 patients initially free of leukoaraiosis developed some loss of white matter and 3 percent had widespread loss. The average age of patients who developed leukoaraiosis was 66.8. The average age of those who didn't was 62.9. Significantly more of the patients who developed leukoaraiosis than those who didn't had at least one stroke � 36 percent versus 23.5 percent. After adjusting for gender, age, smoking history and diseases, including hypertension and diabetes mellitus, the researchers found that the patients who developed leukoaraiosis were 1.5 times more likely to have a stroke. About 11 percent of patients who developed a loss of white matter had more than one stroke, compared to about 6 percent of those without a loss. Streifler says age appears to be the most important risk factor for developing leukoaraiosis. Other factors that were somewhat associated with increased risk were diabetes mellitus, leg pain and calf cramps caused by poor blood circulation, and low levels of cholesterol. Hypertension, angina attacks, and a previous heart attack also increased the risk, but not significantly. "There is not much we can do about age; however, controlling other risk factors, such as hypertension and diabetes, may prevent or control leukoaraiosis, and improve the outcome of patients," he says. Co-authors are Michael Eliasziw, Ph.D.; Oscar R. Benavente, M.D.; Sonia Alamowitch, M.D.; Allan J. Fox, M.D.; Vladimir Hachinski, M.D.; and Henry J. M. Barnett, M.D., who was principal investigator for NASCET. The National Institute of Neurological Disorders and Stroke funded the study. Editor's note: For more information on stroke, visit the American Stroke Association Web site: strokeassociation.org. -------------------------------------------------------------------------------- This story has been adapted from a news release issued by American Heart Association.