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About Me
ZebraChic
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About Me
I have a mitochondrial disease (a suspected variant of MELAS), along with two siblings. In addition to MELAS, I also have a pituitary tumor (with intermittent secreting ACTH and prolactin), orthostatic hypotension, adenomyosis, gastric polyps, and suspected FAP or Familial Adenomatous Polyposis. I would like to meet others who have any of the above disorders and share possible treatments or information.
I have a mitochondrial disease (a suspected variant of MELAS), along with two siblings. In addition to MELAS, I also have a pituitary tumor (with intermittent secreting ACTH and prolactin), orthostatic hypotension, adenomyosis, gastric polyps, and suspected FAP or Familial Adenomatous Polyposis. I would like to meet others who have any of the above disorders and share possible treatments or information.
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Hugbook
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I have been given a clinical diagnosis of MELAS 9 months ago. I am not taking any medication for it. Tried Acetyl - L - Carnitine and it made my stomach have severe pain.
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I don't have any of the things you struggle with but I live in your city so just wanted to send you a hug to encourage you today and let you know someone right in your town cares!
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I hope things get better for you, I am still trying to get diagnosis and know how frustrating it all is. take care
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My wife also suffered from MELAS and I know how lonely this can be for you. I am here to offer my support and help in any way I can. Take Care
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Flower
Some pretty flowers for a pretty zebrachic!
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Support Groups
Close Mitochondrial Diseases
At least two of my siblings and myself have a mitochondrial disorder. It is thought to be a variant of MELAS and nuclear in origin, instead of the typical maternal inheritance. We were diagnosed in 1999 after many years of misdiagnoses and wrong treatments. We're still trying to "fine-tune" our diagnosis and treatment and hope to move in a positive direction in 2008.
Treatments
- CoEnzyme Q Working / Worked
- My family and I use Tishcon CoQ10 gels -- the only CoQ10 that has received orphan status from the FDA. CoQ10 is part of our "mito cocktail" which consists of Vitamins B1, B2, B6, C, E, folic acid, selenium, and alpha-lipoic acid. We also take Carnitor. One of my brothers has seen tremendous improvement after taking the mito cocktail. He's been on it since 2000. Another brother and I haven't been able to take the mito cocktail due to cramping, pain, etc. from the supplements.
