I have white matter disorder, and i keep going back into the hospital to take test to be fullen diagnosed with "metachromatic leukodystrophy or either leukodystrophy." So as of now i take 3 pills 4 times a day, along with another pill to keep the disorder undercontrol.
Hi Cubsportgal 21,
We are a family dealing with Leukodysrtrophy, and we also live in Chicago!
How long have you been dealing with this illness? and what hospital are you currently working with?
If you would like to talk in a more private setting send me an email and i can give you more information and contacts in the area.
All the best
Darren
ALSO A CUBS FANS
Well, i had symptoms in 2006 for about 2 and half months. I was disabled. I couldn't walk, talk or for better words. Take care of myself. Adult stage of leukodystrophy broke my body down into a handicap stage. It was unbelievable! I wasn't very healthy growing up but the doctors always thought it was nothing serious but in reality it was. Something triggered my white matter disorder to handicap me. We still don't know why or how that happened but as for now. The symptoms i have is horrible headaches, and i tend to get misprounce words or maybe call an object something it's not.
It's amazing that it escalated so fast! How is your memory? Mine is absolutely terrible. I'm an alcoholic in recovery and I always have assumed my bad memory is due to drinking too much in my younger days. Now I'm thinking it could be related to being a carrier. How are you feeling today? Are some days better than others?
How old are you ? Are you saying your not sure what kind of Leukodystrophy you have? I still haven't been told what kind I have either it get madding. I still don't know how to treat my symtoms . I am 39 years old and have been told I have leukodystrophy but haven't found a doctor yet to treat me for my symptoms. I have had so many blood test I have a scare where they have took blood. Sarina
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