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fmdqadmin
ezOP
(9/2/02 11:53 am)
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Idaho-FMD
Please share your story.

Jocee
Unregistered User
(9/5/02 8:11 pm)
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Around August of 2000 my Mother started having difficulties
Around August of 2000 my Mother started having difficulties. She suffered from hypertension, nausea, diarrhea, and severe abdominal pain. When her General Practitioner could not figure out what was wrong with her she was referred to a Gastroenterologist and was misdiagnosed with an over active gall bladder which was removed. She spent a night in the Cardiac Unit at a local hospital to see if the problems she was having were heart related. Her heart is fine. Finally after being given a CT Angiogram she was referred to a Vascular Surgeon and was admitted into the hospital immediately following her visit to him. She was diagnosed with Mesenteric Ischemia (blockage of arteries to the stomach) secondary to Fibro Muscular Dysplasia (FMD). One artery to her stomach was 100% blocked and a second artery was 90% blocked. She also showed FMD in her right renal artery (kidney). No surgery is planned at this time.
Sometime between the end of her surgery and one o'clock the next afternoon she suffered a stroke also secondary to FMD. Her right carotid artery was 100% blocked.

I went online and performed a search for more information about FMD. By chance I happened across a message board with a string of posts from people who suffer from FMD. I sent an E-mail and got connected to what we loving refer to as our "FMD Family Group". People in the group suffer from FMD affecting nearly every area of their body. Some have even had brain aneurysms caused by FMD.

We have discovered that there are very few Medical Professionals who actually know about this, what I describe as a degenerative disease, and even less information on the subject. As far as we know there are no research studies being conducted. We have, by the hard work and dedication of one of the group members and her husband, set up our own web site to share information with others.

This is the basic information we know about FMD at this time:

At this stage, the cause of FMD is unknown. (Medical journals) The following facts are known and may provide clues to the cause:

FMD affects women three times as often as men.

The most common age for diagnosis is between 30 and 50 years.

In the kidney arteries, involvement is most often on the right or bilateral.

Several arteries may be affected in the one patient.

More than one member of a family may be affected.

Besides being an obvious need for more medical professionals to learn about this disease, Health and Welfare, Medicare, Medicaid, and Social Security Disability determination doctors really need more information about FMD. It makes it very hard to qualify for assistance and disability status when the doctors reviewing your case have no knowledge about this disease.

It is my sincere hope that given this information your editor will give strong consideration to publishing a story about FMD. Some members of our group have sent similar letters to Oprah Winfrey and even to the First Lady. We are desperate to find a champion for our cause.

Sincerely,
Jocee Vreeland
Eagle, Idaho

FamilyLDR
Unregistered User
(10/17/02 6:24 pm)
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2003 medical conference
Looky at what I found all. It's a search for Medical Conferences. I just put in the dates (from Jan. 01, 2003 to Dec. 31, 2003) and got a list of upcoming medical conferences.

www.healthcareconferences.com/browse_conference.asp

Wonder if any of the organizers would be willing to give FMD, or even some group members, some time? I wouldn't quite know what to say. I guess we could give stories, if nothing else, about how difficult it has been for many of us to even reach the diagnosis of FMD due to a severe lack of knowledge in the medical community.

What do you all think? Is it worth pursuing? Would anyone be willing to spend their own money to attend and possibly speak?

Heck, I was even thinking that if we weren't allowed to have someone address these "professionals", we could sit out in the lobby with signs like:

Do YOU know what FMD is?

Could YOU diagnose FMD?

LOL, I know it's pushy, but with all the E-mails I have sent out, I've gotten so little response. I mean I've E-mailed Medical Journals, Medical Schools, Newspapers, and Oprah. And only maybe 3 responses out of well over 100 E-mails.

Maybe some of you have been actually lucky enough to live in a well populated area with physicians who actually know what FMD is and took it into consideration from the start, but it took 6 months of agonizing pain, weight loss, diarrhea, nausea, unruly blood pressure, an unnecessary gall bladder removal, and a night in the cardiac unit before my Mother was diagnosed. And even now, with Mom being seen by doctors who know about FMD, I find myself having to educate them and push for them to do what some of you do without having to ask. Like ultra sounds. Mom has not had an ultrasound since Feb. 7, 2001. The day after surgery and only because she had her stroke.

Speaking of Mom. Took her to a neurologist Monday. Mom has been having severe headaches. Of course chronic headaches are common in our family, but hers are daily. Not migraine type, at least I don't think hers are, but headaches nearly everyday, all day. Anyhow, I'm hopeful about this new doc. She immediately wants to review all tests done on Mom's neck and head. She wants to rule out FMD in the brain. I've been griping to the vascular surgeon who did Mom's surgery since the day I found our group and realized that aneurysms in the brain could be caused by FMD.

Anyway, give me some feedback about the Medical Conferences. Speak up those of you who are so quiet. Sometimes I feel like you all think I'm a pain in the butt. Course, my own family thinks that a lot of the time........LOL, so you wouldn't be alone there.

Love,

Jocee
Eagle, Idaho

Celeste
Unregistered User
(10/19/02 12:05 am)
Reply
2003 Medical Conference
Will check to see if one is close enough to attend and will let you know.

C

Celeste
Unregistered User
(10/19/02 12:16 am)
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conference
Jocee,

Sent an email to the conference health coordinator asking for information on conference material regarding FMD. It would be a good thing if everyone sends an email asking for same. Will share the response when I receive it.


C

Rick
Unregistered User
(10/19/02 12:35 am)
Reply
Contacts For Health Confrence
www.healthcareconferences...ntact.html

FamilyLDR
Unregistered User
(10/31/02 3:47 pm)
Reply
A letter to the producers of ER the TV series
fmdq.com/erletter.html

Jocee
Unregistered User
(12/22/02 1:47 am)
Reply
Update
Update: Aug. 2002

An abdominal CT angiogram cheking for the cause of cronic lower back pain has revealed Mom now has FMD in her left renal arteries.

Deb552
Registered User
(4/2/03 11:38 am)
Reply
Re: Around August of 2000 my Mother started having difficult
hello joyce, please excuse me if i don't use this format appropiately, i'm pretty computer savy, but know zip about chat rooms and postings. i too have fmd, was trying to find as much info as possible. you mentioned that you found a "fmd" group on line that is like a family to you. do you mean this site (which i was thrilled:eek to find) or is there another that is also helpful. thanks much. Debbie

Jocee
Unregistered User
(4/5/03 12:13 am)
Reply
RE: Deb
Hi Deb,

It's good to hear from you.

E-mail me at FamilyLDR@aol.com.

Jocee

Jocee
Unregistered User
(4/23/03 9:23 am)
Reply
Update - April 2003
On Sunday the 13th we took Mom to the ER. The area below her left eye began swelling and turning black. She also began to have numbness on the left side of her mouth. I knew she had popped a blood vessel but was unsure what to do.

The ER doctor checked her protime level and it was severely high. Should be at 1.5 or 2 and was at 3.67. She was told to stop taking her coumadin for 2 days and see if the swelling didn't go down. She did as she was told and it is healing. The numbness was caused by the blood pressing down on some nerves and it went away as the blood began to be be absorbed back into her system.

The ER doctor said that it could have been just a simple diet change. Vitamin K actually helps your blood to clot so we assume that she stopped eating whatever she had been that was high in Vitamin K and therefore he blood thinned more than wanted. Simply applying her makeup with a sponge could have burst the vessel.

Just wanted to share that with you all incase you ever have this problem.

Bonnie
Unregistered User
(9/8/03 8:32 pm)
Reply
Trying to understand
:rolleyes Hi Jocee, you seem to be very intouch with your mothers predicament and understand alot about what is going on. My wife has recently looked further into FMD as she was diagnosed with Renal Artery Stenosis (FMD). We both looked into RAS but it wasn't until recently that we realised that she had type one Medial Fibroplasia in both her left and right kidney arteries that extend into her kidneys. My wife was beside herself and extremely concern after she read about FMD as we were trying for our second baby. This has been put off, maybe indefinately, until we totall understand her situation. I understand that there are various forms of FMD and was wondering if your mothers FMD was progressive or does FMD remain in the intial diagnosed areas.
We both are very concern about the seriousness of FMD and regarding the doctors lack of concern of provision of information regarding FMD. My wife has been told that she had RAS with a side mention of FMD and that all she has to worry about is Hypertension/ preeclampsia. I now am more concerned about her health, whether or not it is progressive and move to her carotid arteries, which has more dire consequences.
I would love to hear you interpretation of FMD and how your mother is coping with the disease/if it is a disease.

I would also like to hear about whether it is heriditary as we have a four year old daughter and we are both concerned about the possibility of her having FMD in the future. :\

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