I am a 43 year old woman. I have a history of back issues. My spine is fused from T3-L2 due to kyphosis. I went to a new orthopedic doctor about a month ago due to severe pain and a worsening of some of the curvature in my back. While he was doing my exam, he asked me if I had ever been tested for Marfan's. I have not. He said that some of the things he was seeing could point to that. I have had anemia for about a year and a half that I just can't seem to kick. I have very long fingers, long legs, thin build, etc., and I have pain between my shoulders that he can't explain. (I have looked at signs of Marfan's and I do have some, especially in skeletal realm.) He said is might not be classic Marfan's but perhaps a variant. He wanted an echocardiogram done. I found out today that instead of just a regular echo, they want to do a TEE. I was somewhat taken aback by the TEE, because of the sedation,etc. I wondered if anyone has had a TEE and what the experience was like. I had an upper gi endoscopy last year, so I assume it is similar. I also wondered if anyone has any experience with Marfan's.
This just really shook me today. Don't know why, I guess it just seems so much more involved now. Thanks for any thoughts.