maggie Posted May 31, 2009 Report Share Posted May 31, 2009 "I don't think Mayo would be helpful to you....you already have a diagnosis. Your local specialist needs to understand that Mayo clinic isn't any better at treating this in most cases than he is. That's because it's trial and error. Mayo clinic doesn't follow patients (for the most part) so all they will do is prescribe the top meds that tend to help people the most and tell you to try them. Your own local physicians can do that. Get copies of the journal articles that discuss the medications that are tried for folks with these conditions, read this site and other dysautonomia sites and get your local Dr to start prescribing trials."This is the answer to one of the posts. It breaks my heart to come to the realization that is this what we are to expect for treatments? That the patient is to bring in data to a doctor not trained in the area of our needs and ask this person just to try different options and meds on us? Don't we deserve to have a doctor who has knowledge in our disorders? Do you know of any other field of medicine where this type of treatment occurs? Does one go to a doctor with cancer and is asked to bring in all the information they can find and then the doctor will try to see what works? Have I been in never never land assuming that I would be able to find a doctor that would actually have knowledge in this field and be able to treat me? I ask of you on this forum are my expectation too high?Maggie Quote Link to comment Share on other sites More sharing options...
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