I was diagnosed in 1990 at the age of 27.
Began with the normal hand tremors when holding a cup, drop foot and progressed to* general weakness in legs and arms.

Initially I had all sorts of treatments including* cyclophosphamide both IV and tablet form and plasma exchange.* None of these helped.

Only treatment that's really worked for me was IV IG which I only started in 2000 and now have 3 weekly.

My condition worsened gradually prior to ivig but since starting ivig it has improved slightly and stabilised.

Around 5 years ago I decided to change my lifestyle dramatically.* I began moving to a predominantly raw food lifestyle.* I cut out wholegrains, cereals, sugar, alcohol and all tinned and packet foods, ie processed.* My weight reduced to 60kg.

I began exercising, mainly strength work and from a very low base, bicep curls in my left arm were done with no weights just the movement.

I took up mountain biking, just very easy flat fireroads and nothing difficult.* I knew cycling well as I used to race in my early years. This allowed me to exercise without the problems associated with walking, balance etc.

It was amazing how I progressed.* I can now cycle 60 miles including technical singletrack and up huge mountains.*

I still have dropped feet, unable to properly use my calf muscles and have problems with my fingers etc but I workout almost daily targeting my weaknesses with strength training.* My legs and walking is far from normal but my aerobic fitness is sky high to compensate.

This is my story anyway, drugs can take you so far but you can do so much for yourself with a healthy lifestyle and exercise. Never give up and start off at zero if you have to and progress slowly at your place.** Never beat yourself up over failing and always keep in mind your goals.

I'd be happy to share more if anyone is interested.

Good luck to you all and enjoy your next challenge..