I saw my neuro consultant today, the MS specialist. I told her about my relapse and described what had been going on - the arm spasm, various twitches and the loss of power in my leg. In the last few days I've also begun to lose the vision in my left eye again; my optic neuritis is recurring. I asked if there was any treatment for it, but the consultant said no, that my optic nerve was scarred from the initial occurrence and this was irreversible. She said that my tiredness was most likely the reason for my loss of vision, that my good eye wasn't able to compensate for my visual impairment like it usually does and that was why I couldn't see as well. I'm not entirely satisfied with that answer, as I've read other people's blogs about steroid treatment for optic neuritis. But, if she's unwilling to give me steroids, I don't know what other options are open to me.
The consultant said she wants to send me for another MRI to compare the results with the scan done in March and see if there's any progression with the disease. Depending on the results, she'll decide on a course of treatment. She said I'd most likely be put on Extavia, a type of Interferon Beta, which is a disease modifying drug (DMD) and can reduce my symptoms by up to 30%. I would need to inject myself every 2 days and the common side-effects are flu-like symptoms. I react to everything, so it's more than likely I'll experience this.
The consultant didn't seem to be too concerned about my relapse, even when I tried to impress upon her how tired I am. I slept for most of the weekend and had real trouble dragging myself out of bed this morning. But I suppose she hears this all the time from her patients. I was certainly the fittest person in the waiting room. Most were on crutches or in wheelchairs. One poor woman was so bad she looked like she had cerebral palsy.
There was another woman who was clinging onto walls and chairs to get around the room. She was clearly having great difficulty walking, but she refused to accept offers of steroid treatment or crutches. She kept insisting she was fine, that she appreciated their concern, but "that's not an option" (she said this over and over again to everything that the nurses suggested).
I suppose I should quit whining. I'm not that bad. Yes, my body does weird things occasionally and my energy levels are low, but it could be a helluva lot worse. I should be thankful I can walk and I still have my independence. I need to enjoy it for as long as it it lasts and not take it for granted. I don't know what the future might hold, but instead of worrying about it all the time, I should just get on with living my life and enjoy it as much as I can.
That's easier said than done, though. Being aware that there are people worse off than I am doesn't reduce my concern. If anything, it only exacerbates it, as I imagine myself in their shoes one day, perhaps in the not-too-distant future. I've read so many blogs where people ended up in a wheelchair 2 years after being diagnosed. That thought frightens the life out of me. Everything about this disease is so uncertain and nobody can give me any definitive answers. I might be fine for years (so the consultant said), but I might also end up needing a full-time carer, unable to look after myself. It's a lottery, I just have to wait and see what multiple sclerosis has in store for me.
I've stopped being angry, you'll be pleased to hear. Writing my last blog helped to release all my pent-up rage and I'm handling things better than I was. Last week I was quite perky and upbeat. I went to see Bill Bailey (English comedian - Google him if you've never heard of him) and had a really good time. It was a late-ish evening that left me utterly exhausted, but in good spirits. Laughter really is the best medicine.
So, aside from being permanently tired, I'm doing OK for now.
No comments:
Post a Comment