Since this specification is such an integral part of our disease I've been more curious lately. I've found through searching the archives here that the higher the number of repeats the earlier the onset and possibly the higher the severity. I couldn't remember what my repeats were so I pulled my chart from 20 years ago and found it to be 52 CAG repeats. Will this number change as I deteriorate or is it fixed? Is it why I manifested symptoms in my mid-20s as opposed to some who were affected later? Can my future degradation be determined by that number? I feel fortunate that I feel as well as I do considering the bleak prognosis I was given way back then.

Hey Mike

I am not sure about anything that you are asking, and i pray and wish the best of luck to you.

I see you are prior military and I was wondering do you get any disability from VA for Kennedys? I am prior military and wondering or if anyone knows I would appreciate some insight.

Yes I was active duty when I was diagnosed so I do receive benefits.

Mike, the number of CAG repeats is a constant part of your X chromosome. The number has not changed since you were conceived, at which time your unique set of chromosomes was created.

There was a scientific paper that looked at the effect of the CAG repeats on the prognosis. The title was "Natural History of Spinal and Bulbar Muscular Atrophy" and it can be found at this link.

The abstract of the paper says: "The ages at onset of each ADL milestone were strongly correlated with the length of CAG repeats in the AR gene."

(By the way, an "ADL milestone" means an Activity of Daily Living, such as climbing stairs.)

I'm not a scientist, but I believe this is as clear a statement you'll get, saying there is a connection between the number of repeats and SBMA symptoms. The entire paper is worth reading, and it's not overly technical as scientific papers go.

Bruce also did a great job of explaining it in his blog at this link.

This message has been edited. Last edited by: Dan B,

Thanks so much Dan for the great info (it addressed all of my questions!). I appreciate it!