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Originally Posted by savannah
Latest diagnosis is patchy small fiber with minor abnormalities on sweat autonomic test. That still doesn't tell me what wrong with me, what is causing this , prognosis or treatment options or explain my exhaustion. So full body cat scan this week and if that's negative(hopefully) a referral to either Mayo or Hopkins. Get this my neuro wants me to go to Mayo but said its way to cold to go in the winter and I'd never get in before winter!
I'd rather go to Hopkins as I have a free place to stay and can drive there.
so is it really going to make a difference between these two options.?
Can't wait to learn what everyone thinks about these programs. My doc trained at Mayo so he is biased but then said they see 1000 people a month for PN. Hard to believe that. Maybe he meant to say a year but he then described the process and it sounded like a rat race with no option for stepping off their treadmill . I am very assertive about my care and will not do invasive procedures just because they want data for their research, I also can't take many drugs. I don't think Mayo will like my controlling my care so.................
Ideas?
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Savannah - I also have a refferal to Mayo and one from Hopkins. Mayo is rated at #1 and Hopkins #2 for treating neurological issues and my dr said go to the one that takes you in first.
I have found alot of useful info from the posts from silverlady who went to Mayo. Do a search on her threads and see what you can find out. Also, I know at least one other person who posts here who recommends Hopkins. This is a great site to get info from and I'm sure all who have any experience with either will be posting soon so please stand by.