At this point nething is worth a look at...and I am sure u checked this place out, but the best way to know is to go...lol...
Do keep us posted in the Chiari forum as to what is going on....and I wish u all the best with this clinic...who knows u may be finding a place for others to go to in ur area : )
Hi Selma! I'm working on it. As you know it's a long and tedious process. I found a clinic at MGH in Boston who states they specializes with everything I have. They actually get a team of specialists together at this clinic, review my info and let me know if they feel wether or not they should or could do anything to help, before I even go. It sounds good to me!! What do u think? Their NP called me and asked a lot of questions and started directing me in which way she feels we should go and she does feel I should be seen. She stated she suspects EDS amongst other things and is setting up an appointment with Neurologist first then MRA and so on. Whew!!! Here we go!!
Were u ever DX'd with EDS? This could be a result of vascular EDS.....???
Hi!
Fibromuscular dysplasia is an abnormal growth in the blood vessel that is not a plaque (atherosclerosis) nor an inflammatory reaction. The symptoms vary with the blood vessels involved. If the blood vessels of major organ are affected then yes, it can be serious because it can affect the blood supply of the concerned organ. There is no cure for it. The symptoms can be managed medically. Please discuss in detail with your doctor.
Hope this helps. Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.