I’m sorry your going through this, there is such a steep learning curve and so many decisions to be made.
I made 8 treatments at full strength , 2 at reduced then switched drugs on the 11th and did not do the 12th and final treatment as my numbness had spread up my feet and legs to my knees. My hands were totally numb and I had bouts of ataxia that basically leave your hands frozen or paralyzed for short periods of time. My vision went dark a couple times and my doctor said no more. I had trouble from the beginning but was determined to power through everything to get the best odds of a cure. I should have been more forth coming about the extent of my symptoms but I didn’t have anything to compare it to. I think that’s probably how most people in our position feel.
I downplayed my symptoms to my family and the dr/ nurses because it was the way I was coping with everything- if you tell yourself and everyone around you that your fine then it helps you to just keep moving forward. I’m 14 months past my last infusion and my neuropathies are much better, my hands are only numb on finger tips and mildly on my palms. My feet are numb but ankles and up are fine now. At this point it could be permanent but I can live with it.
I am not trying to influence you, we each make the best choices we can at the time. I would do it again if needed but I would try to be more open about what I was experiencing to the drs. I risked permanent blindness and disability and I’m very lucky to have recovered as well as I have.
Sorry for the small novel I seem to have wrote here