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About Me
MamaV
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About Me
Mother of four adult children, three diagnosed with mitochondrial cytopathy and myopathy. The specific type is unknown but believed to be a variant of MELAS. Diagnosis was not made until they were in their 30's, as our part of the U.S. unfortunately has no mito experts or doctors with experience in mito disorders. We must travel out of state frequently for medical care. The possibility that nuclear DNA has caused the disorder instead of the usual mitochondrial DNA has been raised, but testing has not yet been done for that. One son lost all of his hearing a few years ago due to the mitochondrial disorder. He also has autism, now known to sometimes be the result of MELAS. Prior to diagnosis, he had a 20-year history of mixed-seizure disorder with none of the anti-seizure medications helping at all; in fact, they were slowly killing him. Platelets had dropped to 35, 000, his hair was falling out, and many unusual dyscrasias showing up on his labwork. The seizure drugs were completely withdrawn and immediately replaced with the mito cocktail. This not only saved his life, but he's had no seizures for eight years now! The seizures had not responded to the usual drugs given for epilepsy because they were metabolic seizures. This type only needs treatment through the use of the various vitamins and supplements included in the mito cocktail. Lactic acidosis frequently occurs, and the usual treatment for that is an IV of D5 or D10. Since even minor illnesses can cause lactic acidosis, treatment has to be started quickly. My autistic son has a PICC line, so this is usually done at home to prevent a medical crisis requiring hospitalization. ZebraChic is my daughter and RobAbqNM is one of my sons.
Mother of four adult children, three diagnosed with mitochondrial cytopathy and myopathy. The specific type is unknown but believed to be a variant of MELAS. Diagnosis was not made until they were in their 30's, as our part of the U.S. unfortunately has no mito experts or doctors with experience in mito disorders. We must travel out of state frequently for medical care. The possibility that nuclear DNA has caused the disorder instead of the usual mitochondrial DNA has been raised, but testing has
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Interests
Medical research; law (as applies to acts of discrimination against those with special needs, developmental disabilities, and/or rare medical disorders). I also enjoy travel, but would like to do it sometime without the reason being an urgent medical problem ;)
Medical research; law (as applies to acts of discrimination against those with special needs, developmental
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Support Groups
Close Mitochondrial Diseases
I have four adult children, with three of them diagnosed as having mitochondrial cytopathy. All are affected differently.
Treatments
- CoEnzyme Q Working / Worked
- CoEnzyme Q10 is used as part of the mito cocktail: B1, B2, B6, C, E, folic acid, Carnitor, Alpha-lipoic acid, fish oil, and selenium. It's been a life saver.
