I was diagnosed in 2004 after a number of years of now obvious symptoms. I have many progressive symptoms now including weakness in diaphragm, lung muscle, inspiratory muscle, core trunk stability. My walking and extremitity neuropathy are much better than they were several years ago. I have a hard time sitting up. I often fall. I get frustrated and I keep going. I so rarely hear from others like me who have these progressive symptoms even while it appears that overall the MS has slowed. I have new white matter lesions but otherwise have much less change than what my MRIs showed circa 2003-2005.
I did not respond to any of the shot therapies with my symptoms worsening. Ihad allergic reaction to tysabri. I am waiting to see what my options are. My MS seems so odd and different than others thjat have MS. I was in a wheelchair within months of diagnosis but now walk pretty well. EDSS below or at 5 now. Butr my overall weakness and GI and swallowing and breathing involvement seem to confound my neuros and leave me stranded. I have other involvement from other medical conditions. It is hard and it is lonely.