Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Kent My suggestion would be to try the MDA doc. They would be looking at various possibilities and they are studying mito along with other things. I just got my MDA Quest magazine today and they have allocated research money for mito. They are calling it the Mattie grant or something similar. laurie > its good to hear from steve and others that i am not alone in feeling > frustrated in dealing with specialists who know a lot but care a > little and negotiating with insurance folks (or having my pcp's office > folks do it for me). i am so new to this whole process. i don't even > have a diagnosis yet, but its sounds like i am not alone in that > taking a while. i am at the stage now of wondering how to be most > efficient with my resources. i am having to convince our HMO to > approve referrals. i don't want to waste my time and money or theirs. > it looks now like i could ask for a referral to a not too far away > MDA clinic and doctor, to Dr. Whiteman at Mayo and/or to Dr. Shields > at Cleveland. i am convinced that a fresh muscle biopsy is my best > option for a diagnosis at this point. on the other hand, i am not > sure that my symptoms are mito but could instead be inclusion body > myositis or some other disease that i am not aware of now just as i > wasn't aware of mito until only months ago. so what do you think, new > friends? should i go with the MDA doc and let hime help direct me > from there? should i go through the hard work of pressing the HMO for > a Mayo appointment (if i can even get in)? or should i go for the > even longer shot of getting the HMO to approve cleveland? > > thanks for your suggestions. > kent > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Dr. Shoffner definitely did several differential diagnoses for me, including autoimmune disease and familial hemiplegic migraines. Although he is a " mito doc " , in my experience he did not approach my case as " mito or nothing " , his job was to determine what I had via fresh muscle biopsy, and not waste any time (or the surgery) on just ruling out mito vs. ??? I'll assume this is the case with other fresh muscle biopsies, this became clear when I did the office visit with Dr. Shoffner, and more clear when I got the first fresh muscle biopsy report. Take care, RH > its good to hear from steve and others that i am not alone in feeling > frustrated in dealing with specialists who know a lot but care a > little and negotiating with insurance folks (or having my pcp's office > folks do it for me). i am so new to this whole process. i don't even > have a diagnosis yet, but its sounds like i am not alone in that > taking a while. i am at the stage now of wondering how to be most > efficient with my resources. i am having to convince our HMO to > approve referrals. i don't want to waste my time and money or theirs. > it looks now like i could ask for a referral to a not too far away > MDA clinic and doctor, to Dr. Whiteman at Mayo and/or to Dr. Shields > at Cleveland. i am convinced that a fresh muscle biopsy is my best > option for a diagnosis at this point. on the other hand, i am not > sure that my symptoms are mito but could instead be inclusion body > myositis or some other disease that i am not aware of now just as i > wasn't aware of mito until only months ago. so what do you think, new > friends? should i go with the MDA doc and let hime help direct me > from there? should i go through the hard work of pressing the HMO for > a Mayo appointment (if i can even get in)? or should i go for the > even longer shot of getting the HMO to approve cleveland? > > thanks for your suggestions. > kent Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 what are these forms and how would they benefit me? would they help with diaganosis or referral? > Have you gotten info and forms to fill out for UMDF? I imagine you already have but I thought just in case?? Quote Link to comment Share on other sites More sharing options...
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