I’m probably in my 5th year, 3 years since diagnosis. I have limb onset and have maintained weight steadily. My doctors impressed upon me greatly the need to have a feeding tube placed asap, which I did, but don’t yet use. A recent study has demonstrated that those taking Riluzole and consuming a high glycemic diet experience significantly longer survival. Waiting too long to place the feeding tube may make it impossible to do so, as we may not wake up. Please check with your doctor on that matter. Best wishes on your journey.