What will I wear
In my last MS post #36 I wrote about my visit with my neurologist. We discussed many things but one thing I did not post about was our discussion about medicine. Avonex, the drug I take is for Relapsing Remitting MS (RRMS).
I did not mention it because the post would have been too long. But medicine was on the top of my list of topics to discuss. I have suspected for a few years that I’m moving from RRMS to Secondary Progressive. This is hard to diagnose or determine but my neurologist has hinted about this for a while now. The way she hints about it is by talking about coming off the meds (it only works for RRMS) – I know what she’s up to. She’s always telling me that I’m by far her oldest patient on this medication – I get that hint also. Hinting on its own is a dead giveaway – the answer is not definitive.
In my mind coming off the meds is a big leap to take – she also knows that. It’s my only defence, be it real or imagined, from MS completely taking over. There are no other medical options. Taking meds represents a fight somewhere happening in my body protecting me from my immune system attacking the myelin. It’s also a phycological barrier. If I believe it’s working then it’s working.
My last MRI indicated that my MS is stable and that word is not a good word in this discussion because it means that I no longer have Relapsing Remitting MS – probably. And that is another word that defines this discussion.
Stable means that I have had no attacks or relapses since the previous MRI. All the same scars or white spots are still there with no new ones appearing. But that could also indicate that the drug is working. The word probably means not sure. Not a good word for me to make this kind of decision.
Secondary Progressive can also be identified by known symptoms getting worse. So for me my legs have always been my bellwether – they are getting worse but they’ve always been getting worse. How am I to know.
Coming off the Avonex does have some benefits. I’ll get my Sunday’s back as that medicine made me feel crappy for a whole day and started stretching into two days. Also it makes me feel anxious and moody. I’ll also save a fair chunk of money. It’s an expensive drug and even though it is covered under the BC Fair Pharmacare Program, I still have to pay a sizeable deductible.
So I don’t know what I’m going to do. There’s no clear direction for me to take. And whatever choice I make I’ll never know if it was the right one. The same result can happen with either choice. I guess the right choice is the one where I’m still walking in a couple of years. Which one is that.
It’s a bit of a shock to me that I’m at this point in my journey as I did not give this inevitable decision enough forethought. I’m kinda surprised I’m hear giving it so much thought and still not knowing what to do.
So I called her.
Be kind
Ahimsa
Note: This blog is about my journey with MS and Ashtanga Yoga. The dictionary says a journey is travelling from one place to another. That is exactly what is happening with both MS and Yoga.
Wishing you the very best