Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 and , I have gotten the same sort of response from the MDA clinic that is close to me in Iowa. The MDA doctor decided there was nothing he could do for me and he didn't want to cover mito, as he really didn't think it was covered under the MDA. Thankfully, I have been able to go to Boston to see Dr. Korson and I have a few doctors locally that are willing to learn about mito. Not all the doctors, but some. Smiles, a Date: Mon, 10 Apr 2006 12:54:35 -0700 Subject: Re: Re: Help: MDA Advice I sounds like these docs need to go to the MDA website. Besides, how on earth could Mattie Stapanak (sp) been the MDA sponsor for multiple years when he had mito, if mito wasn't a form of MD. I would ask them both of those questions. That really seems wild since MDA's corporate office is in AZ. MitomomX3@... wrote: >I go to a MDA clinic here in AZ and when I went ,the doc there pulled me out >of the MDA clinic and put me in his private clinic because he said I dont >have MD. there is one other woman also that goes there that he did the same >thing too that has mito...I was under the impression that the MDA covered >mito..but it seems you got the same thing. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 It sounds like corporate needs to have some contact with their clinics and make them better informed. Hugs, a C Koch wrote: > and , > I have gotten the same sort of response from the MDA clinic that >is close to me in Iowa. The MDA doctor decided there was nothing he >could do for me and he didn't want to cover mito, as he really didn't >think it was covered under the MDA. Thankfully, I have been able to go >to Boston to see Dr. Korson and I have a few doctors locally that are >willing to learn about mito. Not all the doctors, but some. > >Smiles, >a > > Date: Mon, 10 Apr 2006 12:54:35 -0700 > >Subject: Re: Re: Help: MDA Advice > >I sounds like these docs need to go to the MDA website. Besides, how on >earth could Mattie Stapanak (sp) been the MDA sponsor for multiple years >when he had mito, if mito wasn't a form of MD. I would ask them both of >those questions. That really seems wild since MDA's corporate office is >in AZ. > > > >MitomomX3@... wrote: > > > >>I go to a MDA clinic here in AZ and when I went ,the doc there pulled >> >> >me out > > >>of the MDA clinic and put me in his private clinic because he said I >> >> >dont > > >>have MD. there is one other woman also that goes there that he did the >> >> >same > > >>thing too that has mito...I was under the impression that the MDA >> >> >covered > > >>mito..but it seems you got the same thing. >> >> >> >> >> > > >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 April 12, 2006 Report Share Posted April 12, 2006 I think it's more than corporate internal communications, it's simple twenty-first century awareness. Anyone (like me just now) can go to their own website, click on diseases, and at the bottom of http://mda.org/disease/index.html it says METABOLIC DISEASES OF MUSCLE: Phosphorylase Deficiency (MPD or PYGM) (Also known as McArdle's Disease) Acid Maltase Deficiency (AMD) (Also known as Pompe's Disease) Phosphofructokinase Deficiency (PFKM) (Also known as Tarui's Disease) Debrancher Enzyme Deficiency (DBD) (Also known as Cori's or Forbes' Disease) Mitochondrial Myopathy (MITO) Carnitine Deficiency (CD) Carnitine Palmityl Transferase Deficiency (CPT) Phosphoglycerate Kinase Deficiency (PGK) Phosphoglycerate Mutase Deficiency (PGAM or PGAMM) Lactate Dehydrogenase Deficiency (LDHA) Myoadenylate Deaminase Deficiency (MAD) There we are, in the middle of that list. This is not rocket science. Why do we have to CONVINCE the MDA of the contents of their own website? Sheesh. Steve D. Re: MDA Advice It sounds like corporate needs to have some contact with their clinics and make them better informed. Hugs, a C Koch wrote: > and , > I have gotten the same sort of response from the MDA clinic that >is close to me in Iowa. The MDA doctor decided there was nothing he >could do for me and he didn't want to cover mito, as he really didn't >think it was covered under the MDA. Thankfully, I have been able to go >to Boston to see Dr. Korson and I have a few doctors locally that are >willing to learn about mito. Not all the doctors, but some. > >Smiles, >a Quote Link to comment Share on other sites More sharing options...
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