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gummi's Achievements


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  1. mayo has a charitable care program. depends on a variety of factors, but it sounds as though--at least medically speaking--you may qualify. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance look into it. don't give up hope.
  2. i do not have dysautonomia--my mom does. but it has turned both of our lives upside down this year. when she was first diagnosed in august (after 8 months of insanity) i immediately made an appointment at mayo in rochester. appointments are only done 12 weeks out. i was pleasantly surprised. she's going in mid-december. as others have said, a good PCP is essential to implement whatever the true experts come up with. even if you know you have POTS or whatever, i think the clinics would be a good call. they offer further insight into your diagnosis and its background. they lay out the best path forward. btw, if you haven't seen it yet, PBS and the mayo clinic. it's a 2 hour special that aired recently. it's wonderful. if you're going, it's essential viewing. good luck!
  3. my mom is the diagnosed party, but her autonomic guy tested her. he's a cardiologist who specializes in dysautonomia. he did a foot-specific version of a Q-sart test. my mother has small fiber neuropathy which is most easily tested and recognized in the feet. it can be difficult to pin down the 'type' of neuropathy. physicians have mentioned diabetes, one annoying family doc said it was anxiety (moved on from her!). others weren't sure if it was small fiber or large fiber polyneuropathy... basically, it may not be the most straightforward diagnosis. she was advised to take all the above meds at various times--gaba, lyrica and cymbalta. she wanted to try less medication and more natural stuff. she's very sensitive to medications and dealt with all manner of side effects from the previous 3. instead the autonomic doctor prescribed metanx, a vitamin/activated folate combo capsule. she is unable to tolerate it at the moment and is pursuing further diagnosis next month at the mayo clinic, but as far as i understand, the gaba, lyrica, cymbalta are all meds which mask and block the symptoms/signals of neuropathy. metanx is supposed to allow the small fibers (the nervous system's C fibers) to re-generate, hopefully 'curing' the neuropathy in total and helping some of the other areas which are affected by the body's small fibers. depending on the case it may take some time--months of two capsules per day. this won't apply to every case, certainly, but it's something to keep in mind if and when you are formally diagnosed.
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