Fibromuscular Dysplasia

[livingwith]

It’s been 1 year since I started this long road to find out whats going on..
After CT Scans, MRI’s,and angiogram of brain. I was diagnoised with FMD.But I also have syncope.My blood pressure is going up and down. I was in ER for 7 hours today.But it seems all drs. do not know about FMD. I will be seeing a new Cardiologist to have a pace maker installed. I’m new at this and it’s a really scary disease.Can anyone share their experiences with me???
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[SMH]

I was diagnosed at Mayo Clinic in March, 2008 with FMD in my celiac & most likey Superior Mesenteric Arteries. I was also diagnosed with Arcuate Ligament Syndrome, which is also complicating the chronic abdominal pain I'm experiencing. I'm currently working with a new family doctor, who is familiar with FMD, to locate a surgeon closer to home (in Michigan) to determine a course of treatment. I lost 10% of my body weight, and am slowy gaining weight, but the pain makes eating difficult. So far, I have not been diagnosed with FMD in any other arteries. I found that Cleveland Clinic has quite a bit of information available on FMD, and can be contacted by phone with any questions. They also have an online support group. I saw several previous physicians who didn't pick up on the FMD, which lead me to go to Mayo. I have since discovered that there are physicians and surgeons in my home state that do know about FMD, and have performed procedures on several patients.

[happister]

I'm new to it to a bunch of test and I work for a cardiologist so its my renal arteries and maybe monday they will do the doppler and see the blockage cause it all started with neck pain high bp and nosebleeds in the middle of the night and kidney pain , has been going on for 3 months and now I have a answer but managing the bp is the #1 thing.