I’ve been on Gilenya since November and was getting a little frustrated that, whilst I haven’t had any major side effects apart from the odd dodgy stomach, I’ve also not made any further progress with my walking since being on it.
I know that DMDs don’t fix the damage already caused but up to that point I was improving a little bit each month and had hopes of being able to walk a reasonable distance again. I did see a physio from January to April and worked on my balance and I’m back to yoga classes to increase my strength so felt I was doing all the right things but still found that after just 10 mins walking I was fatigued, my feet were numb and my legs had nothing left. I could force them to keep going if they had no choice but it would then take me several days to recover.
I recently joined the Gilenya Facebook page and noticed that several users said Gilenya caused fatigue in them. Fatigue is my constant enemy so I hadn’t noticed any difference mentally but I wondered if it was affecting my legs. Several users were taking Gilenya at night to counteract any side effects so I thought ‘what the heck?’ and decided to try it.
I feel more mentally alert during the day and my legs do feel stronger. Then came the real test. I rushed round quickly enough this morning to walk to work and didn’t arrive looking like a wreck!! That’s the first time for well over a year that I have walked to work and not needed 10 mins to recover. I could still breathe normally coming up a very slight hill! Woo hoo!!
Now I just have to see if I can make it home. Since last year, the return walk is usually a hoot! The last 100m or so is a real endurance test with my mantra being ‘just one foot in front of the other, you can do it’! Then I get the giggles when I wobble everywhere and I realise that I look drunk.
I’m expecting better things today …