Connect
← Return to First appointment at Mayo with Medical Genetics
Discussion
First appointment at Mayo with Medical Genetics
Visiting Mayo Clinic | Last Active: Nov 7, 2017 | Replies (17)Comment receiving replies
Hi @lazyironman
Rosemary has provided a great link to learn more from others about visiting Mayo Clinic. I'd also like to bring a few other members into this discussion who have been to Mayo Clinic to investigate unknown diagnosis and medical genetics as well as pharmacogenomic (PGx) testing. Please meet @kdubois @kariulrich and @dawn_giacabazi.
You might also be interested in this discussion
MCTD (Mixed Connective Tissue Disease) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease
And this webinar with Mayo Clinic experts
Video Q&A about Marfan Syndrome: Challenges in Diagnosing and Treating https://connect.mayoclinic.org/webinar/marfan-syndrome-challenges-in-diagnosing-and-treating/
You'll read in other comments in the Visiting Mayo Clinic group, that the schedulers try to minimize your time away from home and schedule your appointments close together. Often the results of the first appointments determine the subsequent appointments. @llwortman and @cynaburst may have more tips on how to get the most out of your visit.
Replies to "Hi @lazyironman Rosemary has provided a great link to learn more from others about visiting Mayo..."
Hi LazyIronman,
At least 2 other members -- @major and @janeted -- have mentioned pneumothorax in past discussions. At the moment there isn't a discussion dedicated to the topic. Perhaps you'd like to start one in the Lung Health group: https://connect.mayoclinic.org/group/lung-conditions/
Connect
Thank you @colleenyoung I read though the MCTD discussion. While interesting, and I really feel for those struggling with the widespread pain, it doesn't seem to apply to me. Do you have any discussions about those with multiple bleb-induced pneumothoraces? I'll do a search too, maybe something will come up. I do hope the doctors at Mayo can solve the mystery! Thanks again for the links!