I don't know exactly how to word this, so bare with me.
I have never had an obvious "relapse/remission" since diagnosis, but was on a DMT for years. Was this a stupid waste of money on my part, or are there important unspoken "unknowns" indicating I should still be on one, no matter what "style" of MS the textbooks indicate? The mechanisms built into these DMTs are for the purpose of slowing down MS progression. Doesn't it seem logical that no what "kind" of MS you have, you would want to slow it down, whether or not you can track relapses and remissions or not? The one truism that reaches all across the MS board is that unless you are dead, it could always be worse!
"Categories" of MS vs DMTs has always confused me. I almost felt like being on a DMT was like I was "cheating" or something. On the other hand, after being off my meds for a year or so, I had a blowout in my left ear and lost significant hearing along with a fluttering eyelid on the same side.
When I asked my neuro. if he thought this was a result of my DMT vacation he just shrugged and asked if I wanted to go back on a DMT. I don't know! I knew from day one I was my own healthcare advocate, but sometimes I need some help here! As far as the meds for official treatment for "other" types of MS besides RRMS, no thanks, as I am really not impressed with them at this point.
I have never had an obvious "relapse/remission" since diagnosis, but was on a DMT for years. Was this a stupid waste of money on my part, or are there important unspoken "unknowns" indicating I should still be on one, no matter what "style" of MS the textbooks indicate? The mechanisms built into these DMTs are for the purpose of slowing down MS progression. Doesn't it seem logical that no what "kind" of MS you have, you would want to slow it down, whether or not you can track relapses and remissions or not? The one truism that reaches all across the MS board is that unless you are dead, it could always be worse!
"Categories" of MS vs DMTs has always confused me. I almost felt like being on a DMT was like I was "cheating" or something. On the other hand, after being off my meds for a year or so, I had a blowout in my left ear and lost significant hearing along with a fluttering eyelid on the same side.
When I asked my neuro. if he thought this was a result of my DMT vacation he just shrugged and asked if I wanted to go back on a DMT. I don't know! I knew from day one I was my own healthcare advocate, but sometimes I need some help here! As far as the meds for official treatment for "other" types of MS besides RRMS, no thanks, as I am really not impressed with them at this point.
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