well i had a referral for EDS diagnosis last year, i had it sent to University of Michigan genetics, and they denied me because the "hyper mobility type of EDS is a clinical diagnosis and not important enough to be seen at our facility".
ok so it didn't EXACTLY say that, but that was the gist of it.
and they didn't send me a copy of this, i actually called and asked for a copy to be mailed to me.
on the letter, it actually told the Dr that i had not been sent a copy of this.
so really they left it up to him to tell me that they had denied me.
like they aren't grown up enough to tell me themselves.
ugh.
....
so now, April 2018, i've met three other zebras (1 through my MI support group, 1 through a friend who was like "hey, i have another fried with EDS!", and 1 through another support group.)
the closest one told me to talk to Toledo hospital about a referral for diagnosis, and Toledo hospital sent me to Cleveland University- University Hospital (because these are the dr's that come to Toledo twice a week, but they only look at children when they are there).
so i left them a message last week about being seen for EDS.
waiting to hear back.
i will most likely call them on Thursday (give them a week to get back with me).
There is also an EDS specialist there, Dr. Mitchell. The wait list for her is 18 months. If I can't get in to be seen by one of the mobile EDS dr's, you're darn right I will be scheduling with her. I don't mind waiting. That's what I do.lol. (as long as my insurance is still in effect by then) *eye roll
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