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katyk
katyk asks:
Q:

I wonder if I have a syndrome... I have fibromuscular dysplasia, both morbid hypertension & orthostatic hypotension, fibromyalgia...

Also IBS and inappropriate sinus tachycardia. I had a seizure at 18 months and was treated for three years with meds. I also have rosacia, depression and ADD type 1. I was born with a bicorunate uterus, though did have two children who are healthy. My BP began to rise as young teen, though I was active and have always been thin. How could I have so many things wrong? It would help greatly to have  a name as my docs and I are out of protocols, and I don't want to have another person go through all the doctors pain this has caused. I am now in my forties and disabled due to risk of syncope, and due to my heart have had to give up my  love of skiing, hiking, etc.

Question asked after reading: http://www.education.com/reference/article/Ref_...
In Topics: Physical Health, Medical problems
> 60 days ago

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Expert

Wayne Yankus
Oct 22, 2010
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What the Expert Says:

Dear Katyk:

You have obviously done your due diligence by seeking medical help.  When this much is wrong, you need a medical center such as a university medical center to help coordinate your care.  A center combines genetic counseling, internal medicine, surgery and all the sub specialties you would require.  Start by calling your medical home for a recommendation.  if you are not close to a university center, ask for a referral where you could spend a few days for a full evaluation at one in your state.

Take heart, you may only have to give up some of the activities you love perhaps not all.

Best wishes,




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katyk
katyk writes:
Thanks Doc, but I've already been to University of Washington, OHSU, UC Davis and Cleveland Clinic and seems like I now have 35 docs scratching their heads!!! But I am thankful for you taking the time to answer. Hopefully at least they will name a syndrome after me, eh? What I really need is Dr. House (grin).
> 60 days ago

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