Left hand atrophy/cramping in summer 2015 (year before diagnosis) was first symptom. Left ankle/foot was next in spring 2016.
By the time I went to Japan (2/2017) I was using an AFO on left foot so walking was becoming limited re distance and left hand strength depleted but functional. I was still going to gym and exercising though considerably less vigorously than pre-diagnosis.
Got an AFO for right foot in summer 2017. Began actively using rollator in fall/winter 2017 and continue to use for short distances and around house. I use a collapsible battery wheelchair for longer distances starting a few months ago.
Right hand is presently functional though considerably atrophied and weaker. Left hand is not useless, but not very functional. Core strength is pretty weak though don’t know how to measure. I have been using Trilogy for sleep since February and more and more during the day, though I can go several hours without if needed. Still have my voice though some syllables get tricky. Need to project my voice as sometimes when I talk lower or from a reclined position, I will lose voice.
Is Radicava helping? I honestly can’t say for sure. The Japanese doctor I saw demonstrated test results showing a decline that was less steep than subjects not on Edaravone. Don’t feel like my progression has been rapid, but who can say? Edaravone/Radicava has been our way to attack this monster and I will continue for foreseeable future.
Again, hope this helps. Don’t hesitate to ask if further info needed.
