Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 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!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 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!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 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!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 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!! Quote Link to comment Share on other sites More sharing options...
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