Friday, December 2, 2011

An Answer! FINALLY!

It's been awhile and a lot has happened! We found a gorgeous home which I am absolutely in awe over. I quit my job because there is nothing worse than having to be someplace that makes you sad and miserable. My husband and I started our own business together :)) Very excited by this!

Now, on to the answer mentioned in the title...

When I was first diagnosed with Chiari, I also received a border line Ehlers-Danlos diagnosis. My new PCP is the most wonderful man! I was having chest pains and shortness of breath. He ordered an echo, which revealed Mitral Valve Prolapse with mild Mitral Valve and Tricuspid Valve insufficiency. Now, I have had 2 echos previously and never has this been mentioned... not sure what that means. As is the case so often, I imagine they were withholding that information because it wasn't anything I needed to worry about. I hate when doctors make decisions for me! Anyway, I had a long talk with my doc and he agreed that EDS was a possibility and sent my med records to the Mayo Clinic at my request. After review, the Mayo doctor (a geneticist)called me and talked to me for about 30 minutes. He said that, after looking over my medical history, he was 100% sure I had a connective tissue disease and almost positive it was either Classical or Hypermobility Ehlers-Danlos. He said he could not diagnose me for sure without seeing me but wanted to go over my expectations should I go to Mayo. FINALLY, an umbrella diagnosis that almost all of my conditions!! It may sound weird to some but I doubt it sounds weird to anyone reading this. After all these years, there is an explanation for the pain and problems that have plagued me most of my adult life. I have found an EDS expert right in my own backyard. He is located in South Bend, IN. His name is Dr. Lavallee. I am currently trying to get an appointment but his office does not have the greatest customer service :( The lady that answers the phone is awesome but I can't get the nurses to call me back.

I will update when I know more.
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