I was talking this morning to my step sister about MS attacks or relapses if you choose. We were talking about someone undiagnosed for years therefore not on any MS disease modification medicine. I told her how lucky I was that I was quickly diagnosed but more so that way back then there was ANY medicine for MS. I strongly believe that if I wasn’t on some kind of medicine I would have been completely disabled within a window of less than 7 years and I think that may be generous.
The attack that was my downfall and disabled me was when I was switching between Gilenya and Tysabri. I was off medicine for a month and immediately had an attack. Another one severe enough to do damage and I was progressive enough for it to continue to do damage. To this day I’d be scared to come off medicine, working or not, fearful that I’d have an attack.
I don’t know if relapsing remitting MS has severity levels but I have always thought of my MS as more severe. Not as in progressive MS but severe enough that I can’t go untreated. I know people who can. They are on nothing and aren’t great but don’t have attacks either. I’m not that person. Without some type of disease modification drug, I know I’d be in a wheelchair on a permanent basis and would have been for years now. I’m grateful for the advances in medicine that brought these drugs to the MS community. I still pray for a cure but am thankful for the help. Currently I’m on Rituxan ?Rituxan infusion complete