My Melas Story So Far...

I am 51. I found out I have MELAS about 10 years ago after my Mother passed away suddenly at 50, my brother had his first 'stroke' at 33 and passed away at 41, and my older sister had her first 'stroke' at 40 and passed away at 47. They both ended up blind with dementia in nursing homes.
I had the muscle biopsy test done which was positive for MELAS. I don't want to end up like my family, so I did tons of research.
Luckily I see a geneticist once a year who prescribes 300mg CoQ10 daily and 3000mg LevoCarnitine (Carnitor) daily. I also take many vitamins and supplements: B1, B2, B6, Multi-B, (for energy) Omega 3,6,9, (keeps the blood 'clean') Vitamin E, 3000mg Vitamin C (anti-oxidant) , and a Multi-vitamin with Minerals for Seniors. I make sure I eat every 2-3 hours and always eat right before bed.
So far I am doing really well. Yes I have energy issues and loss of hearing. I changed jobs from Painting Contractor to fostering disabled adults in my home so I can conserve energy. I have read about idebanone (sp?) being helpful but I haven't taken it yet. I try to walk 1 hour everyday (use it or lose it).
When I overdo it the first sign is digestive issues. This is my warning sign. I take good care of myself by listening to my body. When I feel tired I lie down. When I feel shaky, I eat. Some of my friends know about it but don't really understand.
Luckily I was a high-calibre athlete which I think helped with my endurance today, but I NEVER challenge myself now. For me it is more important for my brain to have it's energy needs met rather than impressing anyone else.
Does this help?
design25 design25
1 Response May 22, 2012

Thank you for sharing. The Neurogeneticist I see is in Children's Hospital in DC although I am not a child they specialize in MELAS children, so they took me on. The problem is how do you get your insurance to cover your vitamins. My insurance will not cover my vitamins. I am told my MELAS has mutated beyond the typical patient. I was blind, couldn't walk, had the limp left side issue, lost my memory, had a seizure, etc. I had to learn everything again, and am doing very well minus control of the diabetes ketoacidosis, and all with no medications/vitamins, but still live in fear of another attack b/c I am unable to afford the vitamins on my own. They did recommend L-Argenine. Not sure if you should take that, or if it would benefit you. I am sorry for your losses. My 18 yr old son was diagnosed with my exact MELAS, but not my youngest 2, but I am fearful that they may have a further mutated version. I pray for all my children. I try to walk too, it's hard to walk a few blocks w/o muscle pain, and breathing issues, so they gave me 2 inhalers to help with opening up my airway b/c my chest would hurt and burn badly. Please take care of yourself.