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Re: Kennedy's disease

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,

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

>

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  • 2 months later...
Guest guest

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! "

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Guest guest

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

>

>

>

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Guest guest

>

> 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

>

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Guest guest

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! "

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