Carriers

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ModeratorPermalink Reply by Tracey Stuart on August 24, 2010 at 2:47pm

I had another MRI on Aug 5. This time they did a brain and spine. The brain one showed the cyst on my pituitary glad is stable and not causing any problems. The spine MRI showed results "consistant with leukodystrophy" in other words AMN. The neurologist was not concerned so I don't see him till Dec. At this point I am still able to work part time, in fact the neurologist told me to keep working if I could. I work as a barber on the army base, so when it is busy I find it really hard on the body. I take 200mg lyrica and baclofen 3x a day and a handful of vitamins.

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Permalink Reply by Monica Keenan on November 3, 2010 at 10:55am

I am a carrier of ald my son died of this 5 years ago , i havent noticed any neurological symptoms do you think i should be routinely tested o do you know were i can get information about supplements i could take thanks Monica Keenan

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Permalink Reply by Alma Mariano on May 29, 2011 at 5:13pm

I am a carrier and my brother died of AMN almost 13 years ago. The first few months/years after the diagnosis I would swear that I was beginning ataxia, numbness of the legs, muscle weakness and difficulty going up stairs. I attended the ULF conferences in DeKalb, Illinois which is held annually in July. The largest group there now are the ALD carriers because we don't expire within a few years unlike the ALD and AMN patients. I saw a great variance in symptoms among ALD carriers. Some are already on wheelchairs and have paralyses. However, there are those who show very little symptoms if any. My mother who is also a carrier - obviously because my brother got it from here - is 78 years old and still gardens and lives alone. Almost 13 years now from my initial diagnosis, I am 58 years old and walks 3-4 miles a day. I am not on any medications. I do stretch everyday after exercise, eat healthy, stay active, and do yoga. As ALD carriers, we are not doomed to this disease. Kennedy Krieger recommends physical therapy, stretches, active lifestyle and living healthy. Regardless of what we have, these are excellent recommendations.

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Permalink Reply by mark byrne on September 23, 2011 at 11:22am

My sons mam is a carrier and my son has Ald it shud not affect your girls but if thy have kids u have to be very carfull if thy have a boy there is a 50 50 chance the boy will have Ald so be carfull

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