Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi , Where in AZ? Are you the one in the Phx area? We are in Mesa, and are having a hard time finding resources to coordinate with the care my daughter had at Mass General. Of course, it doesn't help that our PCP told us that my daughter's care was too labor intensive to make her care financially beneficial to any physician's practice (basically - no one here will take her on as a patient). We communicate with her Boston doc much more than we do her local docs. Who do you see in AZ? - Lyn On 4/11/06 5:50 PM, " " > wrote: > Message: 6 > Date: Mon, 10 Apr 2006 08:44:22 EDT > From: MitomomX3@... > Subject: Re: Re: Help: MDA Advice > > 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 Lyn, I live in Prescott valley. About two hours from Phx. The MDA clinic I went to is in PHX. I have a local neuro who treats me and has doe a wonderful job. He sees adults only though, I have to wait until mykids are 18 to get them in to him. He wanted me to get the MDA services and benefits that is why he sent me down there also for any thing he might have missed that would benefit me... we were both dissappointed. do you go to the Az UMDF meetings? I havent made any becuause it is a long drive and they seem to be struggling to get organized. I will be soon coming down there every sat for classes where exactly are you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi , We are in Mesa, 2 miles south of the 60 and Dobson Rd. I have not been to the AZ UMDF meetings yet (mostly b/c it's been hard to even maintain my part time teaching position while Bonnie's been so ill). What kind of classes will you be taking? We just received some of the biopsy results from February, and they show a defect in the ETC complex I and III. They verified the results in 2 different portions of the muscle biopsy, and one showed defects in both the I and III while the 2nd showed a defect in the complex III and borderline complex I. The light microscopy and electron microscopy also pointed to mitochondrial cytopathy. We're still waiting for the analysis of the lactate/pyruvate ratio in fibroblasts. Does the Phx MDA offer resources to mito patients? -Lyn Subject: Re: MDA clinic here in AZ Lyn, I live in Prescott valley. About two hours from Phx. The MDA clinic I went to is in PHX. I have a local neuro who treats me and has doe a wonderful job. He sees adults only though, I have to wait until mykids are 18 to get them in to him. He wanted me to get the MDA services and benefits that is why he sent me down there also for any thing he might have missed that would benefit me... we were both dissappointed. do you go to the Az UMDF meetings? I havent made any becuause it is a long drive and they seem to be struggling to get organized. I will be soon coming down there every sat for classes where exactly are you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Lyn, sorry it took me forever to get back to you. I am in prescott Az. the Az MDA has not really offered me any services but they moved me to the private neuro clinic. I was not happy....but someone else said they did the same to them but they were told we would still get MDA services. I am scheduling an appt to go back and try again. we have a complex II/III defect. I am taking a training course to get a certified service dog on Sat's in PHX. maybe we can hook up sometime Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 I see my MDA neuro privately, but get MDA services. I do have to be seen in clinic before scripts for any major things like a wheelchair are prescribed, but not for batteries or anything similar. Each state (maybe individual clinics) have different policies. laurie > > Lyn, > sorry it took me forever to get back to you. > I am in prescott Az. the Az MDA has not really offered me any services > but > they moved me to the private neuro clinic. I was not happy....but someone > else said they did the same to them but they were told we would still get > MDA > services. > I am scheduling an appt to go back and try again. > we have a complex II/III defect. > I am taking a training course to get a certified service dog on Sat's in > PHX. > maybe we can hook up sometime > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.