Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Maggie You are in my thoughts as the doctors sort this out for you. I hope that these results will allow them to treat you and that you get to feeling better. laurie > > Reply-To: > Date: Wed, 20 Oct 2004 01:05:03 -0000 > To: > Subject: Re: whoewe > > > Thank you for your prayers. > I got the results of my biopsy today and I'm working on putting > together a list of questions that I may want to ask the cardiologist > tomorrow. > > The muscle biopsy was normal with the exception there being a > deficiency in CoQ10. (Pretty extreme.) And plasma labs for > acylcarnitine are off - slightly, indicating a possible Multiple > Acyl-CoA Dehydrogenase deficiency (MADD). > > I wish I had more answers, but apparently I'm not doing that well > with the questions - so answers may be quite a bit down the road. > > Maggie > > > Mitochondrial DNA mutations were normal. > >> >> Thinking of you and praying for the best. You have been and will > be >> in my thoughts and prayers for Monday the 19th and always. > Blessing >> to you whoewe. >> aho!! > > > > > > 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 October 20, 2004 Report Share Posted October 20, 2004 The UMDF website consider CoQ10 deficiency as a form of mito. Co-Enzyme Q10 Deficiency Symptoms: Encephalomyopathy, mental retardation, exercise intolerance, ragged-red fibers, and recurrent myoglobin in the urine. Cause: Probably autosomal recessive. Treatment: Administration of Co-enzyme Q10. wheatchild2 wrote: >Maggie, So glad you at least have some substantial clues that may >lead to more answers. I've read a few case reports of multiple acyl- >Coa dehydrogenase def cases, but it was years ago. I also met a >child at the NIH with this disorder and she did well with co-factor >treatment. My son played with her in the NIH playroom while her mom >and I talked and compared notes. Are they considering that you may >have primary CoQ10 deficiency? It's rare but has been reported. I'm >sure your doctors will have some recommendations for you. Keep us >posted on your progress. > >Take care, >Barbara > > >> >> >>>Thinking of you and praying for the best. You have been and will >>> >>> >>be >> >> >>>in my thoughts and prayers for Monday the 19th and always. >>> >>> >>Blessing >> >> >>>to you whoewe. >>>aho!! >>> >>> > > > > > > >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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