Discussions By Condition: Nerve conditions

recently diag by MELAS syndrome =/

Posted In: Nerve conditions 3 Replies
  • Posted By: Anonymous
  • October 25, 2008
  • 07:34 AM

hello everyone..im a newby here please help me :)

recently i was diagnosed with MELAS syndrome. does anyone know where I can get detailed information about this rare disease, any clinical trials, etc.

Also, could MELAS be a wrong diagnosis?... should I get a second opinion?

please help with anything.. thanks!!;)

Reply Flag this Discussion

3 Replies:

  • omg...thanks blaze. im gonna look into thisand yes i use a wireless phone
    Anonymous 42789 Replies
    • November 5, 2008
    • 05:38 AM
    • 0
    Flag this Response
  • So sorry for the diagnosed. My father has been diagnosed this past July with Melas. Every thing we have researched tells us the later in life the better, the less serve the symptoms are. There is not a lot of information out there you have to spend a lot of time searching. We are stilling waiting for the report for the genetic study. Melas is passes through maternal genes. I would ask for a referral to a to do a genetic study. Did any one else in your family show symptoms? Was a muscle biopsy preformed. Were ragged red fibers present? Sometime the diagnosed can take years. The rare disease website has some information on it. Good luck if I can be of any more help let me know, here are some personal webshttp://www.cfnson.com/melas/mitoindex.htmlhttp://blogs.datm.org/?page_id=22
    jdtireservice 5 Replies
    • November 10, 2008
    • 07:53 PM
    • 0
    Flag this Response
  • I am new here. My 18 year old daughter was diagnosed with Melas syndrome when she was 10 yrs. old. It took 8 months and several storke-like episodes before she was diagnosed. The diagnosis was made through DNA testing along with a muscle biopsy. It showed the 3243 point mutation and ragged-red fibers in the muscle. The elevated lactic acid in both the plasma and the CSF also confirmed diagnosis. Were all these test preformed? After her diagnosis I was also tested and I have the mutation but have never manifested with any symptoms of the disease and I am 47 years old. There are clinical research trials on a drug called DCA to reduce lactic acid in the brain. My daughter was in one about 7 years ago but had to be pulled due to the side affects. I am not sure if this trial is still be conducted but you can check with the University of Florida in Gainsville. I am sorry for your diagnosis. Please consider supplementation of Co-q10, levo-carnatine, Alpha-lipoc acid, and b-vitamins and nutrtional supplementation such as Boost. I hope I could be of assistance.Denise
    Anonymous 42789 Replies
    • February 8, 2009
    • 03:07 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.