Medication
I have been fortunate enough to get medicine for my MS. It does not cure me but it moderates or slows the progress of the disease.
Twenty odd years ago I started Bataseron which is self linjected subcutaneously every second day. I was in my mid to late fifty’s when my neurologist and I talked about coming off the meds. as, at the time it was thought that at that age the disease becomes inactive and the meds. are no longer beneficial.
So I went off Bataseron and several months later I noticed symptoms that I had when I was first diagnosed were coming back. Some of which I have not had in a long time. My neurologist sent me for an MRI which indicated my disease was still active. Apparently this was not expected for a person of my age. So my neurologist put me on a similar medication called Avonex which is self injected intramuscular once a week which is better than getting poked every second day.
I would inject this medication just before bedtime and the next day I felt like I had the flu and also I could be very moody and agitated. Over time this began to stretch into a day and a half. However I was willing to put up with this as I was still walking and the rest of the week was relatively normal for someone with MS.
I’m now in my mid sixties and my neurologist and I have had similar conversations about getting off the meds. The thinking is still that it’s not helping people of my age bracket. But this thinking has been proven wrong once before.
I have to say that my neurologist is the best doctor of any kind I’ve ever had. She knows how crappy I feel when I take this medication so she spends the time no matter what to provide as much information to me as we determine the path together – it’s really quite amazing. I trust her and I know she believes what I tell her about what’s happening to my body. She is the reason I started yoga and later suggested I should teach yoga. I know I’ve never mentioned teaching before and I’ll talk about that in future posts.
My wife and I were about to go on vacation so I decided to get off the meds about four weeks before I left because I did not want to feel like crap while on vacation and I also wanted to see if the medication actually helps or not. Or in other words see if my MS is still active. A vacation would be a great time to test this. How do I determine this? The only way I can figure is to stop and see what happens. I did not make this decision without lots of thought and discussions with my neurologist. However I did not tell her I was going to do this at this time.
Well I’ve been off for about seven weeks and I’ve come to the conclusion that the meds actually make a difference. So when I get home I’ll start taking them again.This is not a scientific approach and in any way intended as advice for whomever reads this; it’s just what I decided to do. Be it right or wrong.
My neurologist tells me all the time that I’m her oldest patient and as I think about it I’m probably rare in that I’ve been taking these meds for over 22 years. I don’t think there are many people who can say that and that means to me that I’m breaking new ground. I don’t say this with conceit or with bravado it’s a humble assessment of my own situation.
I hope I’m right that this medication is helping me. I’ve seen my brain and cervical spine MRI’s and the cervical spine channel worries me the most as it is narrowing and messing with my legs. My legs have always been the most concerning indicator of the disease progression.
I’ll let you know how it goes – either way.