Leukodystrophies Support Group

Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least ten different chemicals. The leukodystrophies are a group of disorders that are caused by genetic defects in how myelin produces or metabolizes these chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the chemicals. Specific leukodystrophies include: adrenoleukodystrophy, neonatal adrenoleukodystrophy, metachromatic leukodystrophy, Krabbe disease, Pelizaeus-Merzbacher...

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  • Lauriegirl

    so much pain

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    A neurologist said without a doubt I have leukodystrophy. The pain is in my legs. It's not constant, but when it is it can be so bad. After two MRI's they noticed milen disappearing from my brain. I don't know all about this. They haven't labeled the exact form of it. Today my legs hurt so bad from cramps. This pain is worse than the regular pain I get. I guess I'm looking for information. What's...
  • deleted_user

    Leukeariaois

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    Does Leukeariaois is a serious concern, what can be done for this, pain on center part of head. Low IgM ,ESR high, high haptoglobulin are these relates to the brain problem.,
  • deleted_user

    Please Help

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    My friends and their little angel need to get in contact with anyone who can help them or just connect with. http://www.myfoxtampabay.com/story/20917134/2013/01/31/hoping-to-find-a-miracle-on-social-mediaPlease contact foxnews13 if you have any ideas or help for them.Thank you!!!
  • deleted_user

    Metachromatic Leukodystrophy

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    My (almost 5) year old daugher was diagnosed just after her second birthday.She has the infantile form and has not had a BMT (too far progressed).The only abilities she has left is hearing and smile response.
  • deleted_user

    adrenolukodystrphy

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    I LOST MY SON IN 2001 FOLLWING A BMTI HAVE STARTED TO SHOW SYMTONS AS A CARRIER HAD A DOC TRY TO TELL ME I WAS IN THE BEGGING STAGES OF MS HOWEVER IM SURE THAT IS NOT THE PROBLEM THE PROBLEN IS THAT I CANT FIND A DOC IN MY CITY WITH ANY KNOLEG OF ALD,AMN
  • deleted_user

    Lil' Grandniece

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    I got news today that my wee grandniece is in the hospice full time now. It really really sucks.My nephew and niece have done so well looking after her, they've showed amazing strength and love through a hard time.I'm not sure how nephew will cope with everything when grandniece passes on. He lost his Mum earlier this year to cancer, and went off the rails for a bit, but he's back on track...
  • deleted_user

    Mixed Signals

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    Mixed Signals Short Circuits Pain... ?If you or you are a caregiver of someone that is in ANY kind of pain or opposite... no pain and having numbness, tingling, burning... buzzing, memory problems or... hundreds of other issues... It is caused by NERVES... mixed signals and short circuits, damaged,Nerves sending the wrong signal outEither Autonomic - effecting small fibers - everything that your...
  • deleted_user

    P.M.D

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    I've started Kaileb at Beginnings-Early Intervention Program. So far, he's doing well, doing everything a 6 1/2 month old should be doing. Which is why I'm going through Beginnings, to make sure he continues to do well. PMD is a disease that will get worse as time goes on.