Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Hello everyone,, Since the last time we posted a message, Mike has been to West Virginia University (Ruby) Hospital,, we just found out today that what Mike has is definitely Myoadenylate Deaminase Deficiency. While it isnt what we had thought, it is still in relation to MD. At least at this time we now know what we are dealing with. Long term effects are less serious than with the mito. He has been told to try Vitamin E and Createne. The createne Im not sure about, I want to see if I can find a sugar free, or low sugar for him.His sugars are finally straightening out with the insulin now. Tks for all your help and suggestions directed to him. Will keep you posted. I hope this might help somone else along the way. and Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 and Mike I am glad you finally have some answers. laurie > > Reply-To: > Date: Mon, 01 Nov 2004 22:52:35 -0000 > To: > Subject: mitochondrial myopathy > > > Hello everyone,, > Since the last time we posted a message, Mike has been to West > Virginia University (Ruby) Hospital,, we just found out today that > what Mike has is definitely Myoadenylate Deaminase Deficiency. While > it isnt what we had thought, it is still in relation to MD. At least > at this time we now know what we are dealing with. Long term effects > are less serious than with the mito. He has been told to try Vitamin > E and Createne. The createne Im not sure about, I want to see if I > can find a sugar free, or low sugar for him.His sugars are finally > straightening out with the insulin now. Tks for all your help and > suggestions directed to him. Will keep you posted. I hope this might > help somone else along the way. and Mike > > > > > > 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 November 2, 2004 Report Share Posted November 2, 2004 , I am glad you have a diagnosis. It is interesting that even though MADD is the most common metabolic myopathy, patients have a great deal of difficulty getting a diagnosis. There does not seem to be much awareness of the disorder among physicians. Regarding creatine, there are a number of creatine products on the market that have no sugar and are pure monohydrate creatine. so you should be able to find something that will be safe for him to try. Some patients with MADD get help from supplements of ribose aka d- ribose, but if your husband has sugar issues, this may not be an option for him, as ribose is a sugar. Barbara > and Mike > > I am glad you finally have some answers. > > laurie > > > From: " " > > Reply-To: > > Date: Mon, 01 Nov 2004 22:52:35 -0000 > > To: > > Subject: mitochondrial myopathy > > > > > > Hello everyone,, > > Since the last time we posted a message, Mike has been to West > > Virginia University (Ruby) Hospital,, we just found out today that > > what Mike has is definitely Myoadenylate Deaminase Deficiency. While > > it isnt what we had thought, it is still in relation to MD. At least > > at this time we now know what we are dealing with. Long term effects > > are less serious than with the mito. He has been told to try Vitamin > > E and Createne. The createne Im not sure about, I want to see if I > > can find a sugar free, or low sugar for him.His sugars are finally > > straightening out with the insulin now. Tks for all your help and > > suggestions directed to him. Will keep you posted. I hope this might > > help somone else along the way. and Mike > > > > > > > > > > > > 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...
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