Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 When Caeden had his muscle biopsy it came back positive for mito but unspecified, on Tuesday we are going for DNA testing ie: MTdna or a depletion. Has anyone been dx through the DNA testing. How effective are they and how long does it take for results? Thanks for any light u can shed on this. We are extremely hopeful we can find out what type he has, as he always seems to be regressing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 , Billy has had the DNA testing. The doctors told us it was like looking for a needle in 10 haystacks. If they had a pretty good idea of what the problem is then they have an idea of which pairs to check for problems in. If they find a problem in those pairs it doesn't mean there are not problems in other pairs since they don't look at them all. They are only looking at the known trouble spots. The only thing it changed for us is to change what research we keep an eye on. We watch the dna replacement research and the research on how they are getting that dna in. I think it took about 2 months for the original results. Twana > Has anyone been dx through the DNA testing. How effective > are they and how long does it take for results? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 -, Our son had it but it came back negative. We were told that less than 3% of those with mito will come back positive for the genetics. The problem is that many docs don't realize this. Our son, for example, is in tons of pain at the moment (has been for 1 1/2 weeks). The pain clinic doc said that he did not have mito because the genetics came back negative. She did become quiet when I mentioned that less than 3% of those affected come back positive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Thanks for all the input seems like we don't have much to look forward to. I guess I was hoping for a diffenative answer. Caeden has had pain issues and they have him on Naprosyn only when he needs it, and he on valium daily. These combined help alot for him. I hope u can find something for your son. > >Reply-To: Mito >To: Mito >Subject: Re: DNA testing Question? >Date: Mon, 17 May 2004 22:17:26 -0000 > >-, > >Our son had it but it came back negative. We were told that less than 3% >of >those with mito will come back positive for the genetics. The problem is >that >many docs don't realize this. Our son, for example, is in tons of pain at >the >moment (has been for 1 1/2 weeks). The pain clinic doc said that he did >not >have mito because the genetics came back negative. She did become quiet >when I mentioned that less than 3% of those affected come back positive. > > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Caeden has had pain issues and > they have him on Naprosyn only when he needs it, and he on valium daily. > These combined help alot for him. I hope u can find something for your son. The pedi said that we could increase him to 3 percodan pills at a time. That, at least, made him stop screaming in pain last night. Hope we find something better. Quote Link to comment Share on other sites More sharing options...
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