Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi , welcome to the group ! You might want to join us monday nights for our MDA Chat. The times and possible guests (Mito experts or other professionals answer questions) will be posted weekly here or you can check the MDA website. We've got a great group and many people like Laurie have a lot of good information. I was diagnosed a year ago at age 34. I've had symptoms since childhood. They've gotten worse over the last few years in particular and cover the full range of organ systems and muscles (primarily proximal which are closest to the body). I also have Lupus and take a lot of medication for that as well. Generally, Mitochondrial disease is treated based on symptoms and other conditions that may pop up secondarily. Some people take the " mito cocktail " which consists of a variety of nutritional supplements and have found some success in relieving symptoms. I was told approximately 20% have some relief of symptoms. Others, have such a mild form that they require no intervention. Most importantly listen to your body. Some people need to rest regularly throughout the day to conserve energy. Eating frequent but small meals containing carbs helps me as well. Don't overextend yourself whenever possible. This can cause further damage to the cells. Also, it's important to eat right (diets vary depending upon your specific condition) and stay well hydrated (caffeine and sugar make you more dehydrated). As far as the specific condition you have, a muscle biopsy (fresh is usually more beneficial than frozen) along with blood tests can possibly determine where your defect is. In many people the testing doesn't show anything specific so docs treat the patients based solely on symptoms. Hope you find some relief and the answers you need. Again, welcome and feel free to join us on mondays. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 also if I don't metabolize fat properly is this also considered a fatty oxidation disorder or are they different yet than us? Fat in primarily metabolized in the beta oxidation cycle, which takes place in the mitochondria. Disorders of fat metabolism such as carnitine deficiency are included in the list of diseases covered by United Mitochondrial Disease Foundation. However, some experts use the term " mitochondrial disease " in a narrower sense, referring primarily to defects in the mitochondrial respiratory chain. I'm curious as to how they determined that you do not metabolize fat properly. I have a primary defect in beta oxidation (fat metabolism), as well as a global mitochondrial defect. Both were diagnosed by muscle biopsy, but they have looked extensively at my beta oxidation function through fibroblasts (skin cells). My first muscle biopsy in 1983 revealed excess fat and glycogen deposits, as well as other signs of a metabolic myopathy. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 , I have COX deficiency, mito myopathy. I am now 39 years old. I was diagnosed approx. 5 years ago. I started with shortness of breath, chest pain exercise intolerance and fast heart rate. I now have stomach, colon and respiratory involvement. Betsy Re: new mito also if I don't metabolize fat properly is this also considered a fatty oxidation disorder or are they different yet than us? Fat in primarily metabolized in the beta oxidation cycle, which takes place in the mitochondria. Disorders of fat metabolism such as carnitine deficiency are included in the list of diseases covered by United Mitochondrial Disease Foundation. However, some experts use the term " mitochondrial disease " in a narrower sense, referring primarily to defects in the mitochondrial respiratory chain. I'm curious as to how they determined that you do not metabolize fat properly. I have a primary defect in beta oxidation (fat metabolism), as well as a global mitochondrial defect. Both were diagnosed by muscle biopsy, but they have looked extensively at my beta oxidation function through fibroblasts (skin cells). My first muscle biopsy in 1983 revealed excess fat and glycogen deposits, as well as other signs of a metabolic myopathy. Barbara 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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