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Memory, Brain Lesions and Guilt

I was diagnosed on January 6, 2020. I have a heavy disease burden with almost all of my lesions in my brain. I started taking Tecfidera shortly after. Every MRI I have had except one showed new brain lesions. So now I'm on Ocrevus. My memory has progressively become worse. I forget words, names, and actual events. I haven't (yet) forgotten the names of my close family, though I have forgotten the names of friends, co-workers and distant family members. It's frustrating. I don't (yet) need aids to help me walk or move about. I have severe balance disorder, but to be honest, that seems to have improved somewhat. Or maybe I've gotten used to it and don't notice it as much anymore. I also have sharp pain in my back every so often, which I attribute to the lesions on my spine. But I've been told that's not how spinal lesions work. So, my physical symptoms are minimal, and, again to be honest Sorry, I couldn't think of what I wanted to say. Sorry for the interruption of what I call White Space. That's when my brain and my current train of thought and my perception of my immediate surroundings go away. When I'm in my White Space, the only way I can explain it is that I'm in a place where there is white all around me. If someone is talking to me, it's very faint and sounds far away. But I feel comfort there. There's no frustration there. Okay, I know what I wanted to say. I feel guilty that I have MS and my physical symptoms are minimal. I feel guilty that I don't look like I have MS. Not that there's a particular look for it, but when I tell people I have MS, they say, "Wow! You look good!" And that makes me even feel more guilty.

Totally! Most of my symptoms are to do with cognition. Such as memory, planning and organising. I also have mild physical symptoms with my balance. I also have fatigue. Combine all these symptoms and this leaves me with invisible disabilities. I think people don’t understand the struggles that are associated. I think many people here will understand. I have heard that here in the UK they will change the disability signs on the toilet to include people who are not wheelchair bound. 🤷‍♀️


Thank you very much for this. I sometimes can't put everything into words, but you've put into words what is happening with me. Very interesting about the UK. I don't think Canada is there yet.