I had ben on it for 2 years @140mg/day without any changes.

My Doctor wants me to stay on it. I hope there is a cure soon!

Are you still om it?

No. I came off it few months ago.

How are you? I have SCA7. And you?

I have SCA 6 I am using a rollator to prevent me from falling. I am 69

I will be 70 yrs. old and I fall a lot, I use a walker to get around.

Milton is my name. I have rare Hypertrophy of the olivary nucleus. I saw on PBS a woman w’ Parkinson’s, with very similar symptoms as I. She was substantially helped by 2 drugs that add dopamine to the brain. Any info as to trials or access might be very helpful.

My neurologist prescribed it today too. Riluzole 50 MG twice a day, Too early to see if it’s beneficial, but
any benefit would be so welcome. By the way. I am in San Francisco and I think a more global acceptance of this medication is significant.