I have MS. I'm in my mid-40s and have few day-to-day symptoms. I'm fairly lucky so far.
But that could all change tomorrow. Some years ago, I woke up and couldn't see out of my right eye. It got better, but it took months to heal (and I was kind of lucky with that, too). I still have reduced grip strength from a 'flare' a few years back. What next? All it takes is one flare to make my life more difficult forever.
The current medicines tend to reduce disease activity - which means most folks have less disability and more mobility than in previous decades - and all have some side effects, which vary in intensity. At least there are pills now: The older drugs were injected at home and tended to make folks feel even worse than modern drugs.
Last resort? Not really. It might be worth the risk of chemo just to not have to have this sort of uncertainty every day. I know chemo brings its own risks, but at least there is a more clear path on what might happen.
I was recently diagnosed with MS myself and put on some of the stronger medication from what I understand (Ocrevus) to make sure my future flares will not happen or at least be a less severe.
Was the vision loss from one eye really all that sudden for you? I am noticing my left seems to feel different and act slightly different when I'm tired. For now I am assuming that eventually I might also lose this eye because of the disease.
For me, it was! But honestly, it could have been weird before and I just didn't notice. I was in the shower and realized that I couldn't see my armpit to shave it. It did get better, though: I went to a specialist eye doctor when I started my medicine (gilenya) and he said it healed really well - he really couldn't tell there was ever an issue.
If it makes you feel better, a lot of folks that do get optic neuritis find that the regain at least some of the vision. And realistically, once I got used to everything being blurry in one eye, it was probably something I could live with if I absolutely have to. Definitely bring it up to your neuro, though, just to let them know. If it is a new symptom for you, you might call sooner rather than later.
And they were right about the meds, and I appreciate the approach. Fewer flares and less severe flares mean a better quality of life for us.
I did tell my MS nurse (idk if that is a thing outside of the NL) she did seem to write it off. I do keep bringing it up everytime but it is a lot better than before. I had like a couple of weeks where I could barely look at a monitor without struggling to read anything. I'll just keep mentioning it during every checkup I will have.
I did read about the ON recovery for most so that does bring me some comfort but it still is a spooky thought.
But that could all change tomorrow. Some years ago, I woke up and couldn't see out of my right eye. It got better, but it took months to heal (and I was kind of lucky with that, too). I still have reduced grip strength from a 'flare' a few years back. What next? All it takes is one flare to make my life more difficult forever.
The current medicines tend to reduce disease activity - which means most folks have less disability and more mobility than in previous decades - and all have some side effects, which vary in intensity. At least there are pills now: The older drugs were injected at home and tended to make folks feel even worse than modern drugs.
Last resort? Not really. It might be worth the risk of chemo just to not have to have this sort of uncertainty every day. I know chemo brings its own risks, but at least there is a more clear path on what might happen.