I have heard lots of people say they went to the study. Was any knowledge gained by going there? I would just like to know if anyone found out anything that they would like to share?
Hi GG, I was just visiting the site, as I am usually on the other site but do pop in on occasion. I read your profile and it was very interesting to me. When you described the rope feeling…well heck…that has been the feeling I have tried to describe to docs. Now I can be quite a colorful personality…so please no one get offened…but I have described it to my docs as penis head…by that I mean it feels like there is a rubber band around my neck and my head swells (yep you know the rest). I do have carotid FMD with renal as well. Interesting the gave you an endorectomy…what was your stenosis percentage and did you have any other symptoms besides headache? Thanks. Take care…mimi
Hi GG, I have not yet been to the study, I will go this winter. If you go to the Yahoo site, you will see that a lot of them have gone. They maybe able to give you a better idea of what to expect.
You probably already have this link but thought I would put it out there anyway:
http://fmdsa.org/research.html
http://fmdsa.org/research_abstract.html
Kari
LOL Mimi!!! I am laughing so hard…penis head??? ha ha ha …Ok… you must share that one with out dear friend Pam! But really, I also understand the feeling completely! I remember walking the dogs with my husband and quoting GG…“rope around the neck feeling” that describes FMD of the Carotids perfectly!
Mimi, didn’t you go to NIH? Maybe some of the Yahooites would be willing to share there experience of NIH here at Careplace. I will ask 
Kari
I have FMD in both vertabrals. This rope thing is so interesting to me. Three days prio to my TIA ,I felt like my neck was in a vice grip. I layed on the floor with a rolled up towell under the back of my neck to releive the pressure. It didn’t help. What is of interest is that I told the ER Dr. and the two hospitalist about the neck pain. When I read all the reports, no neck pain is documented, just that pt. had headache. We need to get these drs. out of the box!
I aslo will go to Baltimore this Winter.
ADK
It wasn’t as much pain in my neck as a sensation, pain radiated down the back of my neck and spread into my shoulders. I could feel the tightening on the front of my neck, like a squeezing, shutting off the circulation.
My medical report said that I had like 70% stenosis, with 90 degree bends. I know that doesnt sound like a lot and they gave me endarterectomy. I think I have more problems than they found, I was having disabling pain, I could not turn my head, they gave me some pain med but it made me sick. I think I was having a stroke and no one reconized it? I felt like I had a rope around my neck and that something was pulling my head down between my shoulders, I could not stand up straight. The rope around the neck thing, it was gradual and got worse the longer I waited to get something done. I still think I have some thing going on in my head. I will be ever so glad to have more test. I may not like the results though.
Hi Kari, yes I have been to the study. My experience was a very good one. While most folks spend the night, I did not as my husband and I were in from the West Coast. I just went back really early the next morning.
I suggest that folks wear comfy clothes such as sweats with no metals. That way you do not have to change for the mri’s. Shoes would be best if they were flip-flops/clogs/slippers or what not…that way you can just slip on and off . I think they might be giving dye on some of the tests now, but not sure. They did not when I went.
There is a bit of sitting around waiting between tests, but it is an interesting place, so I was not bored.
You will get a voucher for the cafeteria. While the food is not gourmet it is passable. They do have a salad bar. As you are given one voucher per meal, I suggest you use it. By this I mean, make sure to pick up a snack, bottle of juice or water to supplement you after the meal.
On the floor that the testing is done there are computers for your use near the receptionist desk. Also another good way to pass the time. There is a hotel near the study that offers a special rate for NIH participants. While it is not “cheap” it is a lot less than the other ones I checked out. Contact Leslie at the NIH for name of that Hotel as I have lost it in this brain.
Hope this helps…mimi
what a jackass doctor!!! haaha
So there are people who do not have EDS but have FMD! Hmm. Wonder how you got it then?
The Study…Knowing we all want answers and treatment ,the study seems the best rout to go. My mother died of cysticgleoblastoma multi form(brain cancer), at age 57. This genenic disease is more rare than Fibromuscular Dysplasia. My sibs and I have worried about the gene mutation for ourselves, and for our childen ,and for our grandchildren for years. Threre have been few if any clinical studies for the rare desease. Now I have been diagnoised wiht FMD. I have always know that doctors only understand the underlanying cause of 20% of what they treat. The other 80% they attempt to treat the symptoms. We as patients get frustrated, and my guess is the doctors do also, but their egos, or communication stlye, will not permit the frustration to be observed.
This is my 20%/80% theory approach to medical care. I get frustrated also,but, we are blessd to have a person such as Dr. McDonnell,MD, who is dedicated to look at clinical findings, and to look for gene mutation, and over lap connective tissue disease. It is my understanding that they are contuining ,also, to look at 2000 previous samples. WOW! bless them!
I will participate in the study, with hope, and with optimism for all of us, but also, for our children, grandchildren,and greatgrandchildren that Fibro Muscular Dysplasia can be move from the 80% unknown cause/effect of disease to the 20% know cause effect,treatment catagory.
I would encourage anyone who finds it possible, to participate in the study.
ADK
Thank you for your suggestions on what to wear. I did wonder about that. What did you find out from talking to Dr. Mcdonnell? What did you learn from your test? ect ect. Tell us more!!
well Dr. McDonnel is extremely informative and kind. Thank goodness there were no “surprises” during my testing etc. There had been some concern about some stenosis found in my spine, but was not nearly as worrisome as suspected. If anything glaring is found Dr. McDonnell will let you know and refer you to your docs to check out.
I did not have EDS. While I showed connective tissue features, my biopsy was negative for EDS. You can really feel her excitement and enthusiasm for this study. This is all very satisfying from A FMD Patient point of view. When I was first diagnosed in 1996, and I asked the doc about any studies going on…well he basically laughed at me. He said “you are to rare for their to be any interest”… "…no one can make money from a rare disease. " Needless to say he is no longer my doc!
Take care…mimi
Hi GG…well most defintely there those amongst us who so far (smile) only have FMD. I have a good amount of FMD friends whom I am in contact with both by e-mail and phone. Only one has FMD. But that does not mean there may or may not be a correlation. As the study results are not even out who the heck knows what’s up. I am a member of the yahoo support group for FMD. That is where I have met most of my FMD friends. I am trying to learn this site as well,as I hope that I can help others who are new to FMD. It is all a mystery to me, and I just hope answers are found.
Take care…oxoxmimi
Well, I asked for info gained from the study, so I will give mine. I learned a lot about my not feeling well, and why. I learned that I am extremely hypermobile, which I really didnt think I was, but I was comparing myself to other family members who are also that way, so I just thought I was normal? HAAHAAAAA, boy was I fooled!! So it seems that my whole family is hypermobile. She found the reason for my bruit in left ear. i have a 3mm aneurysm. She found that I have trace leakage in my heart valves (mitral and ) my heart is somewhat enlarged, I have osteoporosis, scoliosis, kyphosis, blue sclera,