My daughter is 26 and has been diagnosed with "some" form of ld. She has been labeled as CP all her life. Frankly she was fine until two years ago when she started to slow down, forget days and vomited constantly. She lost 60 lbs and after several different specialists we had given up finding out what was wrong when all of a sudden she developed third nerve palsy (which has gotten better) and the fourth neurologist easily diagnosed LD after an MRI. I think because no one had seen her prior to getting sick, and the fact she had CP most doctors just thought it was her CP.
One doctor said adrenomyleoneuropathy, or adrenoleukodystrophy, but one said until an autopsy is performed we won't know more than likely. Being someone who wants to read, and understand, I want to read about someone's similar situation and what happened with them. She is going downhill physically, but certainly seems pretty alert, not able to speak very well any more and it's getting a little tought to eat, can't hold her own utenzils and struggles to pick up anything. Went from walking crutches, working at an MRDD facility and being kinda sassy, to wheelchair and not independent at all. Memory isn't great.
Sorry so long...one never knows when one will find a similar story. After six months from diagnosis, I haven't yet.
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