Guest guest Posted March 9, 2006 Report Posted March 9, 2006 , I am taking the ldn for ALS. I feel that theoretically, if it helps an ALS patient (as it is me), I would think it would also help people with similar motor neuron disorders such as Kennedys disease. My ALS/MND support group that I attend in person has people with other MND's who are going to approach their doctors regarding the ldn given the results I have had. I hope that helps, although I admit it is just my theory. Take Care, > > I could find no reference to Kennedy's disease in the archives or on the > website. Is there any information about it for LDN? It is caused by " > trinucleotide repeat expansion " , " the expanded CAG repeats underlying KD > create an abnormal structure within the androgen receptor called expanded > polyglutamine " (http://www.mdausa.org/publications/Quest/q93kd.cfm_ > > " A treatment that's developed for any one of the nine polyglutamine > diseases is likely to be effective against the others, " Fischbeck says, and, > in an ironic, but encouraging twist, drugs that work against KD might also > work against ALS. " > > So, is the opposite likely to be true? A drug (LDN) helpful for ALS might > also be helpful for KD? > > Kennard > Quote
Guest guest Posted May 15, 2006 Report Posted May 15, 2006 OMG! Dave, I dunno you or anything about Kennedy's but " wasting away " ? I had a great aunt w/ sma, and she pretty much was the size of a tooth pick, I never met her, but when you say " wasting away " do u mean more then the sma effects? I know my butt has started being more boney, but expect that from sma.. Jodi & Maggie May Accessible Travel Disability Travel Specialist and Service Dog " Making a way for YOU to get away! " Quote
Guest guest Posted May 16, 2006 Report Posted May 16, 2006 www.kennedysdisease.org You can read more about it at this website and also connect with others who have SBMA through their dicussion boards and chat rooms. > > hey ya'll been a while since i've posted does anyone here have > kennedy's disease? I had 2 neuros tell me thats what making me waste > away > > > Quote
Guest guest Posted May 19, 2006 Report Posted May 19, 2006 > > OMG! > Dave, I dunno you or anything about Kennedy's but " wasting away " ? I had a great aunt w/ sma, and she pretty much was the size of a tooth pick, I never met her, but when you say " wasting away " do u mean more then the sma effects? I know my butt has started being more boney, but expect that from sma.. > > > Jodi & Maggie May > Accessible Travel > Disability Travel Specialist and Service Dog > " Making a way for YOU to get away! " > > well i am i used to be a big person i feel like im wasting away all my clothes are super big on me and i swear by this it feels like my feet are getting smaller sorry if i affended ya'll > Quote
Guest guest Posted May 19, 2006 Report Posted May 19, 2006 Dave: U didnt offend me at all! Jodi & Maggie May Accessible Travel Disability Travel Specialist and Service Dog " Making a way for YOU to get away! " Quote
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