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I started a month after diagnosis. It worked very well at the start, I kept full mobility for two years and 3 months. And I have Bulbar onset ALS so that is a good 4 or 5 months of extra life for me.

I have been on it for two years and I see my insurance company is paying about $400 out of the $15,000 charge. I would be surprised if anyone's insurance is paying 100% of any Radakava bill.

I have a spasm about every 15 days. I usually start coughing uncontrollably and that puts me in a cycle of not being able to breathe. I go to my cough assist and force air with that down my throat and it opens it up. Unfortunately then it closes again and I repeat. Total time I go through this...

I can't wait to fall asleep and dream of walking, and talking and eating again. I get great pleasure from it. It is the only time I don't have ALS!

I just rinse ot out with cold water and let it air dry. I get about ten to 12 uses out of one before it gets too hard to pull back and just toss it and get a new one. It isn't too expensive.

Hi! I have had bulbat onset for 28 months and got the peg tube 18 months ago. I am 100% on the peg for at keast 6 months. I have the slow feeding system but have never used it. I used a 60cc syringe for about 3 months but got tired of reloading it. So I went on Amazon and bought 150cc tube and...

Seems like a strange issue to me. I have had a peg feeding tube for 18 months and never had an issue. It has to be a faulty valve on the peg in your stomach. I don't want to insult you but do you turn the tube 270° after inserting it? Again just trying to help.

I agree with IGELB, try tral food and broth is a good one to start with. See if he has a reaction to that. I had no issues with the food supplements but that proves nothing for you.

I have been taking both for about 18 months and lacking good solid data is the only the fact that I have been fully mobile for over 2 years I think it has made a difference

I have Bulbar onset ALS and I was diagnosed based on elimination of evertvother possible disease. I had slight twitching on bot legs and one arm. And after 27 months just started to lose mobility. And is centered on my left arm too.