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arabbella91
Unregistered User
(5/7/03 11:17 pm)
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New here
I have been diagnosed since 2001 with FMD and have many questions and was told today that mine probably is the FMD that likes to grow fast and furious. I don't know enough about this disease but mine is very progressive. I will have another angioplasty and will find that out tommorrow but if you have any info it would be appreciated. I am very scared now and don't know what to think. Arabbella

arabbella91
Unregistered User
(6/26/03 12:03 am)
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Here is my story and I am sticking to it
Well it all started in college with symtoms of hypertension but because of my age they said it wasn't a problem. I got Married in 1991 and had a baby the next year and the pregnancy was not easy. I was preeclamtic throughout and had problems even after baby was born. They never want to check you out when you are a young mother so they go right for the post partum depression. Well From 1992 to 1999 I had four children and all the same things happened but each thing would get a little worse with congestive heart failure by baby four. I went to heart doctors and alls they said is we just can't figure it out. Well finally after being on 4 different bloodpressure meds and going out of my mind with keeping four jobs down plus being home to take care of 4 kids I was just a little crazy by then. I finally told my doctor I went off of all my meds you either help me or your responsible for the stroke I have. WEll he put me in the hospital that day got me the tests I needed and sent me to Rochester but it took 5 years of begging and pleading. I took pictures with me of the MRA of the renal arteries that they said were perfectly normal and the first thing the doctor said to us in Rochester was what did they tell you about that supposedly normal picture? We were amazed in 4 minutes he had it diagnosed and told us what we had expected all along. Finally I knew I wasn't crazy and it wasn't all in my head like some doctors would make you believe. I recently had my second angioplasty on the right renal artery again. IT was closed of worse this time and when they say that and then they say the left has about another 10th to go before they will open that one up you wonder where else it is in your body. Well we were told this weekend that I may have a disease called Periphrial vascular disease but we all know it is the FMD. I will see the vascular surgeon tomorrow. I am having such burning pain and bruising down my leg after the angiogram. I was 3 weeks out before any of this showed up so I thought I was in the clear for anything bad. This disease they say goes latent but I haven't lost any of the lesions I have and alls they do is grow madder when you try and open them up. I just keep getting more and more. Now the darn stuff is going to be in my legs? I know others have it in different places what is the prognosis for people like us. I want to be around to take care of my four children and to see them do the many things that want to do in life. I know there are hardly any answers out there but I am 32 and would like to think that it would be possible to live to a very old age of at least 80. I sometimes wonder what the prognosis is when they don't know much about the disease. WEll I was hoping someone would write to me if they read this and hopefully you will. Thanks for listening Arabbella

fmdsucks
Registered User
(7/30/03 10:56 am)
Reply
fmd sucks!
Hello there !
I too was recently diagnosed with fmd but I have it in carotids and am anxiously awaiting another angio to determine if it's elsewhere... unfortunately I don't have answers for you but I am interested to know who you've seen and in what area.I live in chicago and have seen the head guy out of U of C who along with 3 others that don't know what to do with me! I did get a glimmer of hope though recently I was put in touch with a doc who is affiliated with Johns Hopkins and it sounds possibly promising. Any info is greatly appreciated @ this point! Oh by the way I am 36 and have three children and feel the same way about that whole issue! Hang in there and if I find anything new out I'll let you know.;)

berthaconley
Unregistered User
(8/6/03 8:34 pm)
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FMD
Hi,
My name is Bertha and I have fmd in the carotids also. I'm about to go to a nephrologist to see if there is kidney or renal artery involvement. This is all new to me as of May 27, 2003.
I just keep searching the web to see what I can find. I just lucked up on this site.
As I find out more about this disease, I'll share with you.
By the way, for the person in Chicago, I'm in Gary and found a great doctor at Rush who seems to know about the disease. His name is Dr. Phillip Gorelick. So far I'm pleased with him and his approach. You might want to look him up.
If you want to get in touch, my e-mail is berthaconley@aol.com.
Talk to you later.

Bertha

reneeowens
Unregistered User
(8/15/03 9:54 pm)
Reply
FMD
Hi! I am also new to this site. I was diagnosed with FMD in the renal arteries in Feb. I have had high blood pressure since I was 28 (I am now 40). I was also pre-eclampic with my third child. Angioplasty seems to have taken care of the renal artery (although there is an aneurysm on the artery as well). Now I'm being tested to see if FMD has affected any other arteries. All of the doctors I've seen have heard of FMD; no one really knows what to do about it (other than angioplasty). Even when I went to the Mayo in Jacksonville, FL, when the doctor asked why I was there, and I say because I have FMD, he asked, "What is FMD?" Once I said the full name, he knew what it was. However, it is very frustrating to know you have a disease for which there is little information or research on. How does anyone really know what the prognosis is? Good luck to you all as we struggle to understand this disease.

deanab
Unregistered User
(8/25/03 7:06 pm)
Reply
New to FMD
Hi-
I just happened to stumble on this site after searching the web for info on FMD. I am 33 years old and have had high BP for about three years. Finally I found a PCP willing to do some tests... I was diagnosed with FMD a few months ago. I just had my first balloon angioplasty of the renal arteries last Friday (8/22/03) at BI Deaconess in Boston. The vascular surgeon says I am "cured"... from all that I am learning this may only be the tip of the iceburg!

I haven't been able to find much info and most of the doctors and nurses Ii talk to don't even know what FMD stands for! I am frustrated and scared and don't know what to do next - wait for a stroke ????

Any info on doctors or where to go or what to do next would be appreciated - thank god i found this site:)

anewberg
Unregistered User
(10/30/03 7:32 am)
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waiting for results of workup
In the past 2 two years, I have had 3 episodes of unexplained elevated blood pressure, the most recent a few days ago of 170/120. I have also had severe headaches, which my doctors seem to be blowing off. I am an RN by trade which is really bad because I continue to come up with all of these horrible things that could be or are happening to me! I am really scared and hoping for the best. Is the norm for most people diagnosed with PMD an unexplainable elevated b/p? Also, I live in Chicago, so if anyone knows of a really good doctor who is knowledgeable of PMD, PLEASE let me know:) Thanks & my prayers and thoughts are with all of you.

reneeowens
Unregistered User
(11/21/03 6:39 pm)
Reply
FMD
Extremely elevated blood pressure can be a symptom of a renal artery blockage. This blockage can be caused by FMD or by artherosclerosis. The standard treatment, so far, is balloon angioplasty.

Ruthie
Member
(12/1/03 10:51 am)
Reply
Re: Here is my story and I am sticking to it
hi arabbella- I'm 45 and three kids--Keep the faith since the new angios and stenting now a days there is hope. All of our stories relate - not knowing is worse than knowing. what exactly we are up againist? a silent killer if we do not stay on top of it! and take our meds!blood pressure meds and plavix( some people take coumadin) and 325mg Asprin--keep the faith feel free to write to me--God Bless and don't lose the faith-Ruthie

georgie24
Unregistered User
(1/8/04 2:28 am)
Reply
fmd
HELLO MY NAME IS IRMA I M 43. AFTER SUFFERING WITH ELEVATED BLOOD PRESSURE SINCE I WAS 21 AND AFTER TRYING MANY MEDICATIONS IN 11/02 I HAD AN MRI DONE WHICH IT SHOWS 2 KIDNEY ANEURYSM IN BOTH OF MY KIDNEYS ARTERIES THE RIGHT THE MOST COMPLICATE TO FIX THE LEFT ONE THE LARGEST ONE. MY DOCTOR FROM KAISER REFER ME TO THE VASCULAR CLINIC IN UCSF I WAS SEEN BY DR MESSINA (PROFFESOR AND CHIEF) HE TOLD ME I NEED TO HAVE SURGERY AND THAT THERE WAS 95% CHANCES OF A SUCCESS SURGERY WELL AFTER 9 HRS IN THE OPERATING ROOM AND AFTER 7 DAYS IN THE HOSPITAL I WAS TOLD SOMETHING WENT WRONG AND I WAS GOING TO LOOSE MY KIDNEY. SINCE THAT TIME I AM LEAVING A NIGHTMARE STILL MY BLOOD PRESSURE IS NOT UNDER CONTROL EVEN AFTER TAKING 7 PILLS EVERY DAY AND PLUS I HAVE TO HAVE THE OTHER SURGERY IN MY LEFT SIDE. MY DOCTOR IS TELLING ME THAT I HAVE TO HAVE IT BECAUSE THE ANEURYSM CAN RUPTURE BUT I AM TERRIFIED IN GOING TO THE OPERATING ROOM AGAIN I WANT TO HAVE FAITH AND TRUST IN MY DOCTOR BUT I CAN AFFORD TO LOOSE MY ONLY KIDNEY!! I AM REALLY DESPERATE I AM SCHEDULE TO HAVE THIS SURGERY IN FEB 17 04 BUT I DON'T KNOW WHAT TO DO DR MESSINA IS TELLING ME THIS SURGERY WILL NOT BE THE SAME HE SAID IT WILL BE LEST COMPLICATED AND THE SUCCESS IS THE SAME 95% BUT I AM SO SCARE. I HAVE ONLY ONE SON BECAUSE THIS DISEASE TOOK MY OTHER BABY IN 1997 AFTER MY 8 MONTH OF PREGNANCY I WANT TO LIVE FOR HIM I WANT TO BE HERE WHEN HE GRADUATE I WANT TO SEE MY GRANDCHILDREN IF YOU ARE IN MY SAME SITUATION WRITE ME BACK THANKS

FMDQ
Unregistered User
(1/19/04 6:40 pm)
Reply
Your SURGERY IN FEB 17 04
Irma, sounds like you are truly scared. Dont be, have faith and get a second opinion no matter how "nice" your doctor is. It is best to have another set of eyes before decisions are made about your body.

And think positive, you will be there for your child. When I was first told about FMD (I dont like to say "mine" since I dont own it)it was 2001 and I had been having blood pressure issues since 1977 that went untreated. In 2001, when I read what NIH had to say about FMD, it said that those with FMD died early...first I was very upset, then it occured to me that the "life contract" does not say I will live forever. Secondly, who is setting the initial "from" date to die from? I dont know when FMD started in my body, so, the fact that it was discovered in 2001, does not mean that it will cut my life short now.

I have not heard the term "fast and furious" as a diagnosis of FMD. Either you have it, or you dont. Some address FMD different than others, I chose to do more than take an aspirin and so far, while it has not gone away, it has NOT worsen. Be positive, always be positive, there is a solution just within your eye site.

mimi
Unregistered User
(1/29/04 8:02 pm)
Reply
Hang in there Ima!
Yes, Ima go and get a second opinion! You will have peace of mind, which will help you in the choices you make. Have you seen a doctor outside of UCSF, and most espeically outside of Kaiser!
Good Luck to you.

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