Ok, now for the serious stuff. I was diagnosed with MS in 2013. “Demyelinizing (I made up that word, but I think you know what I mean) Illness” they called it for the first few years. From the very beginning I took it as MS. They used to say it’s not hereditary, but certainly, in my family, it is. My uncle (on my mother’s side) and my mom have it.
For the first 3 years I kept on living normally. But in 2016 I started experiencing difficulty moving my right leg. On that occasion, I was given antiinflammatories and those problems disappeared. However, a little later those problems came back, this time to stay. My main problem is that I spent years in the hands of neurologists that did nothing but by-the-book treatment (MRIs every few months, check-ups, rinse and repeat). I started with Rebif and it took a couple of years for them to change to Tecfidera (when I expressed increasing difficulty of movement with my right leg). In no session did any neurologist (I was seen by at least 4) mentioned any of the key terms related to this illness: spasticity, muscle shortening,…I had to figure all that out by myself so everything took longer. Therefore I changed hospitals from Tomelloso to Albacete, knowing they have an MS wing, so I hoped to get better doctors. But no luck: same indifference, same lack of information. I was going to change hospitals again,when all this coronavirus crisis happened.
So, where do I stand now? With my current neurologist mentioning the possibility to change to Ocreluzimab/Rituximab, but I’m still kept on standby. I practically drag my right leg (hopefully my left leg will stay strong) and I have no solution in sight. I can’t hide it from people anymore (only my closest friends, family and colleagues know the truth) and I see myself in a wheelchair, like my uncle and mum. As I said, I lead a simple life. I’d be happy if I could just somehow walk more or less normally. I know it all depends on my right leg’s strength, but I don’t know if I can even keep it, let alone increase it. Do you know anyone that has experienced something similar?And if there is something to do from the physical side? Thanks.
Browse categories and add by clicking on them
You can remove current categories below by clicking the ‘x’.