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@peter21

Thank you sunnyone. I will look more into this disease. Do you have any advice on how to get her to be seen at the Mayo Clinic? They're certainly our number one choice but I've had this notion (perhaps wrongly) that it's almost impossible to get seen at Mayo.

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Replies to "Thank you sunnyone. I will look more into this disease. Do you have any advice on..."

Mayo does have certain specialties and they do treat rare diseases. There is a thread on Mayo Clinic Connect about why its so hard to get an appointment:
https://connect.mayoclinic.org/discussion/cant-get-an-appointment/?pg=7
Persistence and perhaps some testing to support your appeal may help but there is a long waiting list. This may well be the rare disease above which might help get their attention but your mother needs treatment now. So a double pronged approach to get diagnosis now while trying to get accepted to Mayo may be the way to go. Also if there is another university medical center near you that is worth exploring. Nothing is easy about health care these days. Let us know how things go!