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Celeste
Unregistered User
(11/13/03 1:41 am)
Reply
Need a count for those interested in participating in FMD
As you know, David has linked with a doctor in New York who is planning to begin research on the issue of FMD. I have posted the email from David. He is looking for a head count of those who are willing to participate. You can either post it here, or send it to him.

I am in the count!

---------------------------------

I just spoke with the Dr. All we need at this time is a head count of the number of people interested in participating. If you can help me get a count from the others, I would appreciate it.



David H. Hughes
Travelers Ins. / AEIC
P. O. Box 650209
Dallas, TX 75222
1-800-991-5334 ext. 6952
FAX (214) 570-6401

Celeste
Unregistered User
(11/13/03 4:09 pm)
Reply
We need a head count! Numbers matter, remember that.
I am a faculty member of the Cardiology Division at State University of New York at Upstate University Hospital in Syracuse, New York.

Together with Dr. Hani Kozman (Director of the Cardiac catheterization laboratory), we suspect that there might be an association with a particular cardiac disease in patients with fibromuscular dysplasia.

We would like to know if you and the group would be interested in participating to address this issue.


What we would be looking for specifically is that all the participants of your group would answer a questionnaire. Each questionnaire would be analyzed and specific patients would be contacted to answer more specific questions and provide further data.



We believe that there is an important issue that we as cardiologist should address in patients with fibromuscular dysplasia.

Hope you and your group would be willing to participate.


Sincerely,


Jose F. Huizar, M.D.


chindor7
Unregistered User
(11/14/03 5:15 pm)
Reply
FMD
Most patients with FMD have renal stenosis. In my case, I have bilateral carotid stenosis- 100% stenosis on the right and 80% on the left, both vetebrals are also effected at 25%. It took the medical staff 2 wks to diagnose this disease, in the process I developed 2 cerebral hemorrhage and scattered infacts throughout my brain. I truly believe stroke patients are afflicted with this disease, but have gone undiagnosed due to the lack of information. Why FMD was never suspected in a previously healthy adult with complains of headaches, nausea, vomiting and neck pain when the lumbar tap revealed minimal cells?? I am interested in this study as all FMD patients are high risk for strokes and aneurysms.

Linda
Unregistered User
(11/15/03 2:02 pm)
Reply
FMD
When I read post like yours, I get so upset that the research articles out there down plays this disease so badly as an incidental finding that usually causes no problems. Thank you for sharing it reminds me that I am at risk for stroke just by having this disease. I have a 70% blockage in left and 50% in right internal carotid arteries from FMD. I also have FMD in my right vertbral artery. My left vertbral is just small and doen't carry a lot of blood.

Linda Pizer
Arkansas

StephSATX
Registered User
(11/15/03 8:30 pm)
Reply
Count me in as a participant
Celeste/Dr,
Please, count me in as a particpant.

Stephanie in Texas

Celeste
Unregistered User
(11/15/03 10:01 pm)
Reply
Research numbers
Thank you. Have counted you as YES. Will be back with more later...intersted in the discussion here.

C

Celeste
Unregistered User
(11/15/03 10:29 pm)
Reply
Chidor's entry and results of informal POLL on FMD (2002)
Of late I have been questioning the same items you entered. I was diagnosed in April 2001 with FMD and I believe that is only because during a chraniotomy to repair an aneurysms, they "docked" the left carotid and I suffered a stroke upon release. When they checked the carotid, walla, FMD...more checking revealed FMD in both carotids and more aneurysms. To date, one clipped, two coiled and multiple mini aneurysms in the right kidney artery. Oh, they found that the artery was 60% closed down at that time.

A review of what medical records I have available from 1977, revealed repeated issues with fatigue, headaches, vomiting, nausea...the medical staff called it "viral syndrome" and you know what that is. In fact, a Psych was called in a couple of time, all the pain I was experiencing must have been in my head after all. Swelling around the eyes, watering, pain...was called synus problems, even though the sinuses were cleared...and the list is endless.

Bottom line, the FMD would have been diagnosed at autophsy and the medical people would have gone "oops".

So, where are we know? There are similar issues affecting us all who have FMD. I contend however that "some" of those issues are prescipitated by the medications we are "told" to take to resolve "other" issues we are facing.

There is nothing out there to support that the issues we are faced with are FMD related...or are they? Look at the results in the POLL I conducted last year. I am going to repeat it this year and see what I get.

When asked,

1. Are any of the following among your symptoms and health concerns?" 79 replied and said:
#
Hypertension 15 18.99%
Thyroid 5 6.33%
Diabetes 1 1.27%
Allergies to
medicine or food 4 5.06%
Fibromyalgia/
Chronic Fatigue 7 8.86%
Aneurysms 13 16.46%
Headaches 13 16.46%
Renal artery
disease 12 15.19%
Atherosclerotic
arteries 3
Other critical items not listed 6 7.59%

2. "Where is FMD diagnosed on you? 41 respondents said:

Cerebral 3 7.32%
Carotid 10 24.39%
Coronary 1 2.44%
Stomach 3 7.32%
Iliac 3 7.32%
Renal 14 34.15%
Other 4 9.76%
I dont have FMD, a family member does 3 7.32%

3. Also have been diagnosed with fibromyalgia. Out of 11 respondents

No 7 63.64%
Yes 4 36.36%

4. When were you diagnosed with FMD?

Choices Votes % 21 Respondents
1920-1930 0 0.00%
1930-1940 0 0.00%
1940-1950 0 0.00%
1950-1960 0 0.00%
1960-1970 0 0.00%
1970-1980 0 0.00%
1980-1990 0 0.00%
1990-2000 5 23.81%
2000-2005 16 76.19%

5. Is the FMD patient a

Choices Votes % 22 Respondents
Child Male 0 0.00%
Child Female 1 4.55%
Adult Female 20 90.91%






L611aolcom
Unregistered User
(11/26/03 12:05 pm)
Reply
FMD Research
I just wanted to make sure I was included in the count.

Lindsey

reneeowens3k
Unregistered User
(11/27/03 10:54 am)
Reply
FMD Study
Please include me in the count for the study as well. I did try to vote in the poll, but for some reason it doesn't seem to be accepting my vote. I wanted to make sure I was included. Thanks! Renee Owens

bconley
Unregistered User
(12/19/03 6:29 pm)
Reply
fmd
Hi,
Bertha Conley in Gary, IN. Just wanted to make sure I was included in the count for FMD research. E-mail bconley@aol.com.
We need all the help we can get.

Thanks

fmdsucks
Member
(1/2/04 7:39 pm)
Reply
research
I too would like to be included in research... hope I'm not too late, Thanks
G. Dunne8o

Betty Lecat
Member
(1/12/04 7:29 pm)
Reply
RE: FMD Study
Don't forget me~
lecatjb@sti.net
Betty

georgie24
Unregistered User
(1/19/04 2:49 am)
Reply
LOST KIDNEY DUE TO FMD
HELLO MY NAME IS IRMA AND I WAS DIAGNOSED WITH FMD ON 11/02 AFTER SUFFERING SINCE I WAS 23 WITH HIGH BLOOD PRESSURE AND AFTER TRYING ALL KIND OF MEDICATIONS TO CONTROLED WITH NO SUCCESS. AT THAT TIME AN MRI OF MY KIDNEYS SHOW FMD AND 2 ANEURYSM IN BOTH OF MY KIDNEYS FROM KAISER I WAS REFERRED TO UCSF WERE I WAS SEEN BY THE VASCULAR SURGEON DR MESSINA WHO HAS SPECIALTY IN DEALING WITH FMD, I WAS TOLD THE ONLY OPTION WAS SURGERY AND THAT THE ONLY WAY TO DO IT WAS TAKING OUT MY KIDNEY AND RE-IMPLAMTING IT AGAIN AFTER THE ANEURYSM AND MY ARTERY WERE REPAIRED, WELL AFTER 9 HOURS IN SURGERY MY FAM WAS TOLD SURGERY WAS SUCCESSFUL (ONE OF MY BROTHERS NOTICED THAT THE DOCTOR WAS NOT LOOKING AT THEM WHEN GIVING THEM THE GOOD NEWS HE THINK HE WAS TRYING TO AVOID EYE CONTACT AND THAT HE DIDN'T LOOK TO CONVINCED) WELL HE WAS RIGHT AFTER 7 DAYS IN THE HOSPITAL AND THE DAY I WAS GOING TO BE DISCHARGE I HAD AN MRI DONE WHICH SHOWS MY KIDNEY WAS DYING DR MESSINA GIVED ME THE NEWS AND WHEN I ASKED HIM WHAT HAD HAPPENED HE SAID HE DIDN'T HAVE AN ANSWER AND THAT HE WAS IN S|I HOCK AS I WAS AND EVERY BODY ELSE? (DR. MESSINA IS WELL KNOWN AS ONE OF THE BEST SURGEONS IN CALIFORNIA, HE SAID I WAS HIS FIRST FAILURE) HE SAID THAT THERE WAS A 95% CHANCES THAT SURGERY WAS GOING TO BE A SUCCESS WELL IT DIDN'T HAPPEN AND NOW I AM STILL TAKING 7 PILLS TO CONTROL MY BP AND WITH ONLY ONE KIDNEY. I AM SCHEDULE TO HAVE MY OTHER SURGERY IN FEBRUARY 17 TO REPAIR THE OTHER ANEURYSM AND I AM TERRIFIED DR MESSINA TELLS ME THIS SURGERY WILL BE LESS COMPLICATED AND HE IS TELLING ME THAT THE CHANCES OF SUCCESS ARE THE SAME 95% BUT EVEN THAT I TRUST DR MESSINA I AM VERY SCARE, I HAVE ONLY ONE KIDNEY BUT MY DOCTOR FROM KAISER TELLS ME THAT IS BETTER TO HAVE SURGERY NOW THEN WAIT FOR SOMETHING TO HAPPEN (ANEURYSM CAN RUPTURE, MY BP CAN GO UNCONTROLED AND ALSO HE SAID AGE IS A FACTOR I AM 43 NOW) PLEASE I WILL APRRECIATE ANY ADVICE, ANY INFORMATION, AND WHAT WOULD YOU DO IF YOU WERE IN MY SITUATION? I AM VERY DESPERATE I HAVE A SON THAT I WANT TO SEE GROW AND BE A GRANDMOTHER, A MOTHER AND FAM THAT I LOVE VERY MUCH. PLEASE I WILL APPRECIATE ALL YOUR PRAYES. THANKS AND GOD BLESS YOU ALL

elaineyx
Registered User
(1/19/04 9:57 am)
Reply
interested in participating in FMD
count me in
Elaine

mimi
Unregistered User
(1/31/04 8:02 pm)
Reply
Study
Howdy...just found your site a few days ago, even though I have studied FMD on the internet for years. Great site! I have already learned...! Yes I would like to participate in the study. I am still trying to figure out how to register on this site. Being the computer guru that I am :) ::) My e-mail is imim1256@yahoo.com
Thanx..

gguess36
Registered User
(2/22/04 7:59 pm)
Reply
Re: We need a head count! Numbers matter, remember that.
I am interested in participating in the study. I was diagnosed in October with FMD in renal artery, also aneurysm after many years of unexplained high blood pressure. Is it too late to get involved?

Edited by: gguess36 at: 2/22/04 8:20 pm
bconley
Unregistered User
(3/1/04 1:07 am)
Reply
fmd
Hi,

Oops! I gave the wrong e-mail address. I don't want to be left out of the count. That's berthaconley@aol,com.

Please include me.

Thanks,
Bertha:)

KaPage
Registered User
(3/4/04 11:52 pm)
Reply
FMD Study
I am interested in participating in the study. My email address is pstowe@sitestar.net. Also, does anyone know of a doctor or hospital in Virginia or North Carolina who knows anything about FMD? I was diagnosed in August 2003 after suffering a stroke, secondary to a vertebral artery dissection related to FMD in my vertebral arteries. My right vertebral artery is 100% occluded, and I was told that the left artery shows "some narrowing." Ultrasounds and studies in August did not indicate involvement with any other arteries, i.e. renal, coronary, etc. I just turned 38 years old; I am married with two teenage children. I had a fast, complete recovery from the stroke, and I am doing very well on Coumadin and Aspirin therapy. Other than being a little overweight, I am healthy...I'm a nonsmoker; no hypertension; no problems. However, I am very paranoid about my future with this disease. My neurologist is great, however, he has been very upfront in that he doesn't have a lot to offer due to the fact that there is very little medical documentation on the longterm treatment of FMD. He has mentioned "tapering off the Coumadin", and quite frankly, this frightens me. I have had headaches as long as I can remember; these were very severe prior to the stroke, and since the diagnosis and the Coumadin therapy, I have had very few headaches (the occasional headache has been mild.) I can't help but feel that this improvement has been due to the medication. My medical doctor has suggested that "in my search for information" I search for a medical institution that has performed some studies of FMD and request a second opinion. I live in Virginia, near the North Carolina border...I'm hoping to find information from Duke University Medical Center or Wake Forest Medical Center in North Carolina, or UVA or MCV in VA...somewhere within a reasonable driving distance from my home. Any suggestions????

fmdq
Unregistered User
(3/6/04 12:46 am)
Reply
Welcome to the site
First, yes, consider the Coumadin withdrawl. Sounds like you are gathering the information that you need to look at a healthy future. I dont know about North Carolina as a source of medical care regarding FMD. I would recommend that you check into places like Johns Hopkins in Baltimore and University of Maryland. The Neurology staffs there are well versed with FMD and alternative treatments other than Coumadin.

Would you post your "story" in the part of the site called "FMD around the World"? There may be others there and if not, others can find you and information can be shared on specifics.

There are alot of links here for you to review the meds that you are on and comments on treatments. The bottom line is to do what you think its right for you. I am a Johns Hopkins patient myself. So far, I have not needed radical intervention, hope it stays that way, but they see FMD quite a bit and deal with it daily.

P MACE
Unregistered User
(3/8/04 4:37 pm)
Reply
THE STUDY
I WOULD BE INTERESTED IN PARTICIPATING IN THE STUDY.
MY E-MAIL ADDRESS IS pdmace2@yahoo.com
THANKS,
PAM

gguess9
Unregistered User
(3/8/04 5:08 pm)
Reply
Count me in
I would like to participate in the study.

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