new form of slowly progressive Al s

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Hi Skyehy

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I did some research and there is a slowly progressive form of this awful disease. Ya'll prob know that but it was new to me. It was found on chromosome 9.

I will bring it up when I go see Dr. Beson at the mda/Al's clinic. Is this dr an AL s specialist? Anyone know? I'll try to find the link to the research.

Anyway, My r calf muscle seems to be wasting now. :shock: I know it doesn't just happen but I don't look at my legs that much. Only took years and years for mine to waste. Also leg looks noticeably smaller. But not freakin out. It is what it is!

Kate
 
Check the ALS site for info on your doctor. If he's on their list, he's a specialist.

As to leg weakness, none of us are exactly the same one limb to the next. As for muscle atrophy--mine took months, not years. When the muscle died, the atrophy quickly followed. Within 4 months I'd say.
 
Would be interested in reading an article if you've got one.
 
i see dr beson in okc. yes he is an als specialist. you're in good hands.
 
Kate, from what I have read, I think you are mistaken. Perhaps you are confusing articles you have read. Could you please provide a link? c9 and ALS pertains to FTD/ALS and familial FTD/ALS.

We don't like to put things out there unless we can positively show the research article to back it up. Otherwise, this leads to confusion for those undiagnosed.
 
Yes, Brooksea. I am thinking of familial ALS because my two uncles had the disease. I'll find some more links. Actually found this at caringforcancer.com: The Leading Caring for Cancer Site on the Net

In addition, a rare form of autosomal dominant ALS (designated as ALS4) has been mapped to the long arm of chromosome 9 (9q34). Although autosomal dominant ALS usually has adult onset, this form of the disorder typically becomes apparent by the second decade of life.

One autosomal recessive form of the disorder (known as ALS2) has been linked to the long arm of chromosome 2 (2q33). ALS2 is a slowly progressive, early-onset form of the disease, sometimes called juvenile inherited ALS and found in populations in North Africa and the Middle East.

In October 2001, a research team reported the discovery of a gene mutation responsible for ALS2. The findings also clarify why clinicians have confused ALS2 with another neurodegenerative disease known as juvenile primary lateral sclerosis. Different mutations of the same gene are found in the two conditions, indicating a common genetic origin.

With ALS2, symptoms generally appear in the first or second decade of life and progress slowly for 10 to 15 years. With ALS1, symptoms generally occur when the individual is in his 40s or 50s, and the disease progresses more rapidly.
 
90% of ALS is sporadic.
It would be nice if they could find a cause--as we all know a cause for a condition makes it much easier to treat and/or cure.
 
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