Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 --- medical question mark medical_questionmark@...> wrote: > > > Thanks a lot for answering my questions, > I will be asking doctors in India, if I could > benefit from a skin and muscle biopsy. > > I have also read that mitochondrial diseases can > affect any organ any time. How true is that? > > Also, that many mito diseases are characterizd by > mental retardation and cognitive involvement . > could we say that one day my intellectual > capabilities may be affected. I have two children who don't have official mito diagnoses. Their current diagnoses include metabolic disorder, not otherwise specified (presumed mito). We have not had skin or muscle biopsies because they are not very accurate. If they are negative, many docs will say that you don't have mito even though you may actually have the disease. There are no good diagnostic criteria. My son is 17 and has autonomic, neurological, musculoskeletal, endocrine (hormonal), bladder, psychological, GI, pulmonary, integumentary (skin), hematological, behavioral,fine motor, fluid balnace, and possible cardiac issues. He has high normal intelligence but has low normal reasoning ability and low processing ability. He's failing school. He has severe fatigue, severe migraine (better now at a couple of times a week vs constant--started at age ten), and has lost about 40 pounds this year because he can't eat. He's starting to get autoimmune issues such as rosacea and eosinophilia. He will most likely never hold a full time job. We'll be lucky if he ever has any job. He doesn't drive because of his processing issues and probable absence seizures. He has periphral neuropathy. My daughter is almost 8 and has significant pulmonary issues. She also has cardiac, autonomic, musculoskeletal, GI, neurological, hematological, and integumentary issues. She's very smart but was born very prematurely. She has atypical cerebral palsy. She has problems in math. She is ADHD with fatigue that requires the intermittent use of a wheelchair. She uses oxygen periodically. She has fluid balance issues, migraine (starting at the age of four) and temperature control issues. We don't know what will happen with her. I'm almost 42. Just finished my second BS--one in nursing and one in zoology. I've been a high school bio teacher and almost finished my MS. My recent graduation was with honors. I have soft signs of mito. I have fatigue, headache, musculoskeletal, fluid balance, two sleep disorders (including a central nervous system problem), integumentary, and autoimmune issues. I've had three very difficult pregnancies that resulted in the birth of two children (one at 22 weeks and one miscarriage). I had preeclampsyia with the first pregnancy. What I'm trying to say is that you never can tell. I work full time. Last week I worked 52 hours. It kills me physically to work this many hours but I have an easy job (for a nurse, that is). I feel much better on the mito cocktail. My son is tons better on the cocktail. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Van Verst tbnkatie@...> wrote: --- medical question mark After consulting two different neurologists, I don’t know whose advice to follow. Though both have advised against going for a muscle biopsies, one has suggested that I start taking the mito cocktail, the other says that apart from vitamin E and cq10. taking the other supplements would be a waste of time and money. Do any one among the group who has not undergone muscle biopsies but is still a suspected as having a mitochondrial disorder like me , is taking the prescribed supplements as in the umdf.org wbsite medical_questionmark@...> wrote: > > > Thanks a lot for answering my questions, > I will be asking doctors in India, if I could > benefit from a skin and muscle biopsy. > > I have also read that mitochondrial diseases can > affect any organ any time. How true is that? > > Also, that many mito diseases are characterizd by > mental retardation and cognitive involvement . > could we say that one day my intellectual > capabilities may be affected. I have two children who don't have official mito diagnoses. Their current diagnoses include metabolic disorder, not otherwise specified (presumed mito). We have not had skin or muscle biopsies because they are not very accurate. If they are negative, many docs will say that you don't have mito even though you may actually have the disease. There are no good diagnostic criteria. My son is 17 and has autonomic, neurological, musculoskeletal, endocrine (hormonal), bladder, psychological, GI, pulmonary, integumentary (skin), hematological, behavioral,fine motor, fluid balnace, and possible cardiac issues. He has high normal intelligence but has low normal reasoning ability and low processing ability. He's failing school. He has severe fatigue, severe migraine (better now at a couple of times a week vs constant--started at age ten), and has lost about 40 pounds this year because he can't eat. He's starting to get autoimmune issues such as rosacea and eosinophilia. He will most likely never hold a full time job. We'll be lucky if he ever has any job. He doesn't drive because of his processing issues and probable absence seizures. He has periphral neuropathy. My daughter is almost 8 and has significant pulmonary issues. She also has cardiac, autonomic, musculoskeletal, GI, neurological, hematological, and integumentary issues. She's very smart but was born very prematurely. She has atypical cerebral palsy. She has problems in math. She is ADHD with fatigue that requires the intermittent use of a wheelchair. She uses oxygen periodically. She has fluid balance issues, migraine (starting at the age of four) and temperature control issues. We don't know what will happen with her. I'm almost 42. Just finished my second BS--one in nursing and one in zoology. I've been a high school bio teacher and almost finished my MS. My recent graduation was with honors. I have soft signs of mito. I have fatigue, headache, musculoskeletal, fluid balance, two sleep disorders (including a central nervous system problem), integumentary, and autoimmune issues. I've had three very difficult pregnancies that resulted in the birth of two children (one at 22 weeks and one miscarriage). I had preeclampsyia with the first pregnancy. What I'm trying to say is that you never can tell. I work full time. Last week I worked 52 hours. It kills me physically to work this many hours but I have an easy job (for a nurse, that is). I feel much better on the mito cocktail. My son is tons better on the cocktail. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 --- medical question mark medical_questionmark@...> wrote: > Do any one among the group who has not undergone > muscle biopsies but is still a suspected as having a > mitochondrial disorder like me , is taking the > prescribed supplements as in the umdf.org wbsite My children have a diagnosis of metabolic disorder, NOS. I have no diagnosis but am mildly symptomatic (do have a diagnostic lab for a med chain FOD on newborn screenign labs). My son is 17 and takes Carnitor 990 TID, CoQ10 200 BID, Vit E 400 IU BID, Vit C 500 mg Q day, multivitamin w/iron, alpha-lipoic acid 300 mg q day, selenium, niacinimide, Vitamin B-12 5000 mcg BID, Vitamin B-2 200 mg TID, and his regular meds (lamictal, neurontin, prevacid, vicodin, ? starting gastrochrom, tigan, and phenergan). I take the Carnitor, CoQ10, B-50 complex BID, Vit C 500 BID, alpha-lipoic acid, selenium, niacinimide, vitamin w/iron, and am starting Provigil again. It's helped both of us tremendously. My son uses high doses of B-12 to help combat behavior and psychiatric issues and B-2 for severe migraine headaches. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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