MVP Syndrome or Dysautonomia

[arlice]

My 37 year old son, Jim, was recently diagnosed with mild mitral valve prolapse. His dad also had it and had a St. Jude valve replacement in 1993. Jim is experiencing very disturbing symptoms that seem to be those of dysautonomia. It is affecting his job as a UPS driver and makes him sometimes feel like he is dying or just not able to do anything for a time and then it will all go away and he feels fine. We have found the Autonomic Disorders and Mitral Valve Prolapse Center online and located in Birmingham, Alabama. Do any of you know anything about this center? We are located in the Kansas City area and would like to find someone closer to home but would go to Alabama if necessary. His doctor mentioned just today in response to an email sent by Jim's wife that there is no one he knows of in KC but mentioned a Dr. Yee at Washington Univ. in St. Louis. Anyone know of him? Or is there someone else specializing in this syndrome? How about Cleveland Clinic or Mayo? Any help would be appreciated.

Arlice Gallagher

 

[Wise]

Arlice, I don't have firsthand knowledge of the clinic, but I have read a book by its founder (I believe), Lyn Frederickson, R.N. about MVPS. I found it quite helpful. Hope your son gets the help he needs....you can feel like a lone ranger when you are so affected by an "invisible" condition.

Wise

 

[joanne6]

Book is helpful

Book is helpful

I also have the book mentioned above and found it very helpful.
Joanne