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Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

Hi there,
New to the board.
My mom was recently diagnosed with ALS (her mother and grandmother both had it so it is clearly familial). She has the bulbar form and her speech slurring was the first symptom. She was diagnosed early due to the family history. We pretty much knew what it was right away.
Anyway, in early Dec. 06 she was doing fine, no muscle weakness anywhere other than the early signs of speech issues. She was still exercising and doing all of her regular stuff. She is 65 by the way. She began taking Rilutek in Novemeber and had a very bad reaction to the drug with severe anorexia, fatigue, and some other symptoms. She also got very sick with some type of virus around December 10th. Since then she has been progressing very, very rapidly. She says that her mother's progression was much slower. She is having a strange neurological symtom in both feet. She says that it is very painful to walk and is currently using a cane. She describes that feeling as if she is walking on rocks. She sometimes has tingling and sometimes burning and also says that her feet "sieze up" at night. This is such a wierd symptom for ALS from everything that I've read - my understanding is that it is motor and not sensory. Her ALS neuro saw her today and he said that he has seen this occasionally with the familial form. My mom swears that it is from the Rilutek (she stopped that after about 2-3 weeks of being on it due to other severe side effects). I think that it may have been triggered by the virus that she had. She is now walking with a cane, speaks about her leg muscles starting to weaken, and the speech difficulties are progressing rapidly. I know that it can progress quickly but I just didn't think that it would be happening so fast.
Any thoughts or feedback are greatly appreciated, especially about the sensory symptoms in her feet.
Thanks so much!

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