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Mimi
Unregistered User
(2/4/04 10:27 pm)
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Informative Web Sites
Hello out there: I have been searching for more info on FMD for quite a few years. But most of it is the same information. Does anyone know of an updated site? From reading these stories,I realize that I might be a bit in denial thinking my fmd might be contained in just my renal arteries. Well at least that is what the doc's say. But lets face it they don't seem to have all the answers. I now only have one kidney due to FMD, and am concerned about the future. I wonder if anyone knows a Doctor in the San Francisco Bay area who specializes in FMD. Would appreciate any feed back.
Thanks...;)

Betty Lecat
Member
(3/26/04 1:01 pm)
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RE: UC MED CENTER SAN FRANCISCO
Hi, Mimi...
My name is Betty and I live in Oakhurst, Ca.
I had surgery (removal of aneursym) of renal artery diseased kidney artery at UC SF...Excellent hospital!
Have you found a Dr yet?
Betty

Mimi
(3/27/04 7:50 pm)
Reply
Doctor Ca...
Hi Betty: Thanks so much for the reply. Nope have not found a Doctor yet who professes to know much about FMD. Did go to UCSF in 1996 for second opinion before they embolized my left kidney. But he was a specialist in hypertension. My current cardiologist is in search of a good Doc for me to have some support with the FMD. Is your doctor such a person? I am 47 years young and have FMD in my remaining kidney. Have had 8 arteriograms in the last 7 years (to perform angioplasty). Now it seems I have 70% blockage in my carotids via ultra sound. But just got the MRA back which disputes this. This is all very frustrating to me. Coincidentally my sister (49) has the same results with her ultra sound and then MRA with different results. We have entirely different medical personnel ....so I am wondering which test result are more conclusive. Thought the MRA was the better....but now I am not so sure. Will be seeing the doctor in a few days to get some answers.
Well I hope your health is on an upward swing. I never really understood about the aneurysm potential until as of late. My understanding had been more about the webbing. But with more information popping up....I am learning I have a few more obstacles to consider with the disease.
Is Oakhurst down south? I am in Sebastopol...Northern California....home of the Gravenstein Apple.
Thanks again Betty....Mimi:)

georgie24
Registered User
(3/29/04 5:09 pm)
Reply
Re: Doctor Ca...
HELLO MIMI MY NAME IS IRMA, I HAVE FMD. MY DR.LOUIS MESSINA IS A VASCULAR SURGEON HE IS AT UCSF HE IS A VERY GOOD DOCTOR HE WROTE A CHAPTER ABOUT FMD MAYBE YOU WANT TO TRY HIM. I LIVE IN THE BEATIFUL BAY AREA TOO (EAST BAY) TAKE CARE

Mimi
(3/29/04 8:39 pm)
Reply
Thanx for the Name
Hi Irma: Thank you for the Doc's name. I recently saw a vascular surgeon (who I will be seeing tommorow) and he mentioned he was going to talk to someone at UCSF about me. I will check and see if it is Dr. Messina. It is great just to hear about a Doc who might have some knowledge. My nephrologist today said I probabaly know more about my disease than most doc's....how very sad is that? Have you ever told a Doctor you have FMD and they think you are talking about Fibromyalgia (or my favoirtie Foot and mouth Disease...hee-hee). Well, Betty also said there was a Doc at UCSF...so I guess it is time to start the trek (okay only about 45 mins) to the city.
Take Care and Thanx a lot!
Mimi:)

Betty Lecat
Member
(4/2/04 2:48 pm)
Reply
REl MIMI...UC SAN FRANCISCO
Hey, Mimi, Hi!
Just checking in to see if you've found a Dr yet?
UC SF...to me...(or Stanford University) would be the closest...just tell them you want "a Dr who specializes in FMD"...
Not only Irma and myself, but several others who post on the Yahoo FMD Site have "made the trek to San Francisco/the university". Personally, from what I've learned...(remember, this is just me...) going to a university or Mayo Clinic is best bet to follow?

If it is my plight in life to have FMD, I'd rather have it now, than as little as 9 years ago as medical profession is really getting into it...

Keep me posted?

Betty

(p.s. when I went to UC SF, I saw a Dr Goldstone...one of the head vascular Drs there...he is now with University of Ohio...another (from what I understand) savy FMD institution....

B.

Mimi
(4/2/04 3:03 pm)
Reply
Hi Betty Thanx for the Info...
Okay...sounds like I will hook up with UCSF. As I am in Sebastopol....it is only about 45 minutes away. My vascualr surgeon here knows Dr. Messina there and has contacted him about me. Right now we are on the wait and see about my carotids. Another MRA in six months. I was handling the FMD plight okay while just in my renal artery....but since it has "moved on up" I am a bit overwhelmed. But I always try and remember I could walk outside and get hit by a car...so I will hang in there.
Now tell me Betty...are you also the Betty on the yahoo site? I am just now putting everyone together...and am so thrilled with my cyber friends!
Where in the Bay area do you live?
Okay...take care and thanx a million for all the thoughts. Mimi

Pfairsd
Unregistered User
(9/11/04 2:21 pm)
Reply
FMD
It's been several months since you've written. HAve you seen a specialist yet? My husband had a stroke in May, which we find is due to FMD in his carotid arteries. We're in San Diego. I have lots of questions, and the articles are so very depressing about possible outcomes.

berry1244aolcom
Unregistered User
(10/21/04 6:18 pm)
Reply
FMD
I, too, have FMD and also have it in my renal arteries and am eager to get all the information I possibly can regarding this horrible disease. So far, all I've been told is to take an aspirin a day. I don't know where to turn with this. I was diagnosed with this in 2001 and I've been told that with the proper diet and exercise I can control this disease - surgery is out of the question especially for the arteries going to the base of the brain (the internal corodid arteries) as that type of surgery has not been FDA approved as of 2002. Maybe someone can help me. I'm open to suggestions. Feel free to e-mail me.

Thank you,
Ginny

bconley
Unregistered User
(1/3/05 4:47 pm)
Reply
fmd and the New Year
Hi Everybody!

Happy New Year from Gary, IN. Here's hoping that this will be a better year for all of us with fmd. Maybe this is the year for a scientific breakthrough!! Maybe that breakthrough will be that doctors will start to try to find some answers for us. Oh well, health and happiness to all. Don't get discouraged. Ii'll keep you all in my prayers and you all please continue to pray for me.

Bertha
BERTHACONLEY@aol.com
bconley2@comcast.net

sterkozemailcomau
Unregistered User
(1/25/05 12:54 am)
Reply
Fibro muscular dysplasia-
Hi to all

I have just been diagnosed with FMD of the internal corotid's and renal arteries and am on plavix. Will consult with DR in a few months as to my next move re ballooning/stenting.
I'm so surprised with getting this disease. No-one in both sides of my family have had anything like it - I just don't believe it's heredity.
There seems to be a number of us who want answers, and a fix but not much new treatment seems available.
At this stage, if I can keep abreast of the sensation of my head feeling left of centre, i can just cope.
Does anyone have further info please. ie. what works for you in order to manage this FMD.
Please let me know, regards, Anne.in Australia.

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