TYSABRI It does a phenomenal and remarkable job at preventing new lesions and the textbook defined clinical relapse—- but that in fact is half the battle for many of us. Previous damage can wax and wane symptomatically with a wide range of variability. I was diagnosed 3 yrs ago with extensive lesions only after a profound loss of function after a surgery occurred but had in fact demonstrated early lesions 6 years prior on a MRI that produced minimal symptoms of numbness and tingling the neurologist did not correlate with early MS. Unfortunately the disease progressed substantially over that period of time. Following initial steroid therapy and slightly JCV+, I was started on Tysabri with positive lesion control but progressive symptoms that wax and wane. My MS specialist is hesitant to change therapy due to the extensive disease already present even with the persistent immunsuppressed state I am clinically in due to Tysabri (I appear clinically like I have leukemia/lymphoma) due to the drastic effects of Tysabri working like its “supposed “ to. In addition to the symptomatics I stay sick and have developed an extremely heavy allergy burden... To keep on it or not is the “Question?”
Well that was the Question...
Following military retirement after 24 years, relocating to Florida, and being referred to a MS Center of Excellence at the VA, I have since transitioned over to Ocrevus with subjectively much better physical and clinical symptoms to include labs since Dec 2019. Objectively, still anemic and being followed closely for that but otherwise anticipating what the MRI will show after having been on it for a year. My second full Ocrevus infusion is in early June! 😉
Working with MS
Still confused...
I'm new here
Diagnosed in march. I can't believe its happened.
Soooo impatient for next MRI... what should I expect?
