I was at the Australia Day celebrations at the Mallala oval this morning, talking to many different people and enjoying the lovely sunshine. One of the people I spoke to was a friend I haven’t chatted with for some time, I’ll call him M.
M was recently diagnosed with having MS. This was after over thirty years since having any major symptoms that could have been put down to MS. M was tested for MS with both lumbar puncture and MRI, and his neuro at the time said it wasn’t MS. But last year, another major episode led to another neuro, after another MRI, declaring it was in fact MS and would have been back then, the first time.
We chatted further and M told me he’s now on Tysabri, and not enjoying it/not thinking it’s doing him any good. His symptoms are getting worse, and he’s concerned about the risks with jvc inherent when you are using this method of treating MS. I mentioned the need to do what feels right for you, and wished him well.
It seems that these drug treatments certainly lead one to carefully considering how far one is prepared to possibly get better. My thoughts on this are that we all have to make up our own mind about what we’re prepared to do to help improve our health. I would never have thought I could give myself regular needle injections, but I could and did.
Two years of weekly Avonex shots in my thigh. I’m proud of myself for being able to do it, but I’m so happy not to be having to still do that. The Gilenya medication, which is in capsule form is so much nicer to do, one capsule every morning, easy-peasy!
If something goes wrong with this method though, and I had to take something else, I wonder … Would I go back to Avonex, which worked OK (or seemed to anyway). Or would I look into the newer medications? At this stage, I haven’t really considered this, I’m just hoping I can go along as I am now, getting better, but still not symptom free.
The ‘better’ is good enough for me, if I have to live the rest of my life as I am now, that’s not a bad thing. I can walk, talk, think and drive. My quality of life is good, slowed, but only a by little bit. I never wanted to run marathons anyway.
I’m living my life how I want to, I’m living well with MS!
Mick, Jane and Me 