Discussions By Condition: Brain conditions

Susan

Posted In: Brain conditions 2 Replies
  • Posted By: Anonymous
  • September 29, 2006
  • 04:09 PM

Hi, My daughter was recently diagnosed with MELAS. She is 18 and is currently attending college. Her health is pretty good. She has never had a seizure or been hospitalized. Her main symptoms are fatique and muscle weakness, oh and ADD issues. Her doctors can't really tell us what her outcome will be. And I worry that she will get overtired and start to decline.
I have two siblings who died from complications of MELAS. One was 15, the other was 30. The younger had more muscle weakness and the older seizure problems. Anyone know a good doctor out there or just some advise. It is hard trying to give my daughter a life and not worrying about the future, if you know what I mean. Well, I have never joined one of these discussion things, but could use some support from people in the know with MELAS.

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2 Replies:

  • Susan,Myself and my twin brother have MELAS. We are 41 and were just diagnosed three years ago. Your daughters symptoms are similar to ours. But ours have progressed over the years but at a slow rate. I of course have done a lot of research and those with MELAS progress at different rates for various reasons. But I would like to tell you of something that has definetly helped both myself and my brother. L-Arginine. It has made a significant difference in how I feel and my energy level. It is not a cure but it makes a huge difference. I also take double the dose of Creatine. I have tested this by taking both for awhile and then not taking them for awhile the difference is staggering. I have sense started taking Vitamn B-2, and CoQ10 after much research. It has made a big differnce. It is not a cure but it does make my symptoms less of an issue. I look at it as slowing the progress, even though I have no way of scientificly verifying this. I feel for your daughter and your entire family. If there is any more I can do please just ask. Tim
    Anonymous 42789 Replies
    • January 5, 2007
    • 01:56 AM
    • 0
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  • Tim,Thank you for sharing your story with us. After 3 years of vague symptoms, I am currently being investigated for MELAS. I am curious as to what dosages of L-Arginine, Creatine and CoQ10 you are taking? Interestingly, I recently noticed a couple of Japanese research articles on L-Arginine reducing stroke like episodes in MELAS (2004, 2006). Thanks. Tony
    Anonymous 42789 Replies Flag this Response
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