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First start with a genectic specialist
For years i was told i had about 6 different problems for chronic pain. Finally i found that doctors are taught almost zero on this. Specialist look for what might relate to what they treat.it took me three aortic dissections at one time at 56 and a aorta heart valve replacement that could have possibly been prevented . Genectic doctor diagnoised it later.
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Hello @judeeo, I apologize for the late reply.
Would you mind sharing a bit more about what your genetic specialist found out? What was misdiagnosed in the first place and what was your final diagnosis?
I was guessed at by the genectic team at vanderbilt in nashville, then went to LSU, again thought it was conncetive tissue not sure which one. Then I heard about Dr.Claire Frncomano head of genetics foir USA. I got a free flight out there and after a 5 hour or so exam she agreed I had a form of connective tissue that was in my genetics. I have stayed in touch wiuth her every few months. UAB is doing a study as I do not have DNA for lopez diaz,marfans, VAscular 5,ehlers danlos.quite a few prople have had these problems in my family.
UAB ib birmingham has a great genetic department, they did one of the the largest DNA test ever on me,so far found I have one mutated gene. Sorry to say my family is not taking this seriously. As if they find it there is nothing can be done so why know?
sad
judee