Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 This is a list meant for adults with mito and their caretakers, so hopefully most of our information and ideas relate to adults. Many of us have children who are also affected (several are adults as well), so kids are mentioned as a part of the total. I have never noticed improvement (hard to judge with slow ramp ups) from the CoQ10 and Carnitor, but sure know that they are helping when I have had to go off for a muscle biopsy. I couldn't wait until I could go back on. The dosage might need to be increased, but a doctor should make that decision. I worked up until about a year ago, but used a scooter or power wheelchair for the 12 years before that and took off days as needed. I also spent my week-ends and evenings " doing nothing " to get through the days. I have just been approved for SSDI benefits. I was getting disability payments through work. It was a disability program that I had been paying into for 27 years. Good luck, laurie > I've been lurking on this list since about August. I noticed the topic > of adults with mito has come up more frequently lately. I have a > question(s). I have been on Carnitine, CoQ-10, and Vit. E for quite > some time now and haven't really noticed any improvement. When I > started the Carnitine & CoQ-10 initially 2 yrs ago, I noticed some > immediate improvement which quickly waned. Also when I attempted to > return to work full-time last spring I made it through 6 weeks before I > had to quit due to significant muscle atrophy. Is this typical with > mito? Are many on disability? I don't know if my symptoms are from > mostly from mito as I also have other diagnoses. > > Thanks, > > > > > > > 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 February 6, 2006 Report Share Posted February 6, 2006 Laurie, Thanks for your reply. I know there are different types of mito and that some are more severe than others (that's about all I know). The kind that affects children is quite severe (from my understanding), so that is the distinction I was implying. I was nebver asked to go off my Co-Q-10 and Carnitine for the muscle biopsy, should I have done this? Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Di There are different opinions, but I had to go off of it for my fresh muscle biopsies. I was not yet on it for my frozen ones which were before it. One thing about muscle biopsies - the right tests have to be ordered and there are few labs that can do the mito tests, even on a frozen biopsy. laurie > Laurie, > > Thanks for your reply. I know there are different types of mito and > that some are more severe than others (that's about all I know). The > kind that affects children is quite severe (from my understanding), so > that is the distinction I was implying. > > I was nebver asked to go off my Co-Q-10 and Carnitine for the muscle > biopsy, should I have done this? > > Di > > > > > > > > > > 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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