Just wanted to say hi to everyone. Haven’t been good with keeping in touch for awhile. Has anyone heard anymore about the NIH study? I got an e-mail back from them about 2 weeks ago saying that they would be starting to see FMD patients again hopefuly in the late spring. So I’m on the list somewhere and hopeing that I get a chance to participate and get more information and help.
Rainy
Hi all, my name is Holly. I’ve known about my FMD since 2005. I knew something was wrong, but couldn’t get anyone to listen. My husband went with me to my GP appointment, gun toting deputy uniform and all, and was finally able to be seen by a specialist. The day after that appointment, I was in the hospital getting angioplasty for an 90% occlusion to the right renal artery. I didn’t have too much of a problem until March 2009. I had he worst headache for 18 days, another in August of that same year, then nothing until October 3, 2010. I again couldn’t find an ER or a doctor to listen to me. They kept telling me I had a migraine. Well, this headache was now 8 weeks long. I demanded to go see my neurologist…he refused to run scans!, But I went to see a neurologist who said he was familiar with FMD. He actually prescribed my endomethicin which could have killed me. I called the office and told I wouldn’t be taking that med any longer, but I needed another appointment. THANKFULLY, he wasnt there! His Nurse Practioner looked at my chat and said “oh my Goodness Holly! You have FMD. You need scans run!”
Just more…after getting the scans, they found 5 cranial aneurysms, 3 which have been clipped through craniotomies this year. I now have an appointment with a gastrointestinal doctor because I’m showing symptoms of mesenteric artery problems. Please pray for me…
Holly
Hi - I got into the study and was only part of the one-day study - I understand the longitudinal study may be full for now, or I did not fit the criteria for getting into the longitudinal study. I think one of the main benifits to me was the genetic testing for collagen gene problems- I am glad to participate and contribute to the reserach efforts. I kept in mind that although She examined me thouroughly and gave me good insights, Dr. Naz can’t take over as my treating physician for FMD - so I see Dr Olin for my on-going care, And she and my doctor share info so I get the best care. I am very glad to have done this study
WOW, LUCKY YOU…I haven’t every had so much as a response letting me know that they received my submission. I took a great deal of time filling out the application, and put my heart into it, not even a 30 second response. Very sad, not the type of professionalism I was expecting from the group running this study, they are meant to be conssumate professionals. Keep us up to date on your condition and any good/bad symptoms or information you may have gained from working with fmd experts. Be well
Hey Marge- well maybe another reason was I applied before lots of people got to know Dr. Naz at the June 2008 conference- She is really overwhelmed.
As I understand it, Her original grant and funding is for research of Ehler Danlos - and the FMD subset was identified within her larger group of “collagen defective people”. So she is picking people who really look like EDS. And then of course I live 30 minutes away so I could fill in last minute cancellations. - Ironically I did not carry the main gene for EDS, or the other two.
They are very professional and responsive - but I bet they could not handle the large response they got and continue to get - So it probably does not make them look as great as they really are. I know how it feels to spend so much time on the forms with no reply. Even after you do the forms you may not meet the criteria for the study -
Oh well - if you do get in, rest assured you will feel totally different. She is so caring and attentive - once you are “in the club”. She is amazing - as a scientist she has no obligation to “help us” - but she goes out of her way to give you advice the way you’d expect your own clinical doctor to give. I have never seen a research doc give advice, consultation and collaborate with other doctors - she is really kind.
well If you get in and come to the area, I can put you up or at least meet out for lunch or dinner. I hope you get in soon - it will be worth it, though it is taking forever, and understandibly-bumming you out.
Karen
Dear Karen,
thanks so much for your kind and caring message. I am friends with Cheryl
Golden(FMDSA), who also went through the full-on study and spoke of the
professionalism you mention. I only comment so that if the feedback is ever
examined, those offering the study understand how important either an auto
response, or a 30 second response can be for those in poor health.
I hope to become a part of the study as I have been told I am "interesting"
FROM the perspective of my medical challenges and how I have adapted to the
things that have happened to me as a result.
You are more than welcome to e-mail me directly, as opposed to utilizing the
frustrating firefly method, but it is completely up to you. mr8046@gmail.com
.
My name is Margaret, Large Marge is just funny to me and I use it as an
on-line “handle”.
Tell me more about what is “wrong” with your health, we are all in this
together.
I am off to the docs this morning to obtain a referral, it is time for
another 3-d ultrasound, I went from 5% stenosis on my left renal in
September, to 65% blockage a month ago, this fmd is aggressive and I don’t
need any additional kidney challenges.
Yours Truly,
Margaret
On Sun, Feb 22, 2009 at 9:50 PM, kptocs <
fmd-fft-11636@lists.fireflyhealth.org> wrote: