I am new here and wanted to share about what has definitively been the roughest few months of my life.
It all started mid October of last year. A rainy Monday morning that somewhow had to be perceived through a blurry glare. It took me at least a couple of hours to react to this new sense of reality. In fact I did start work and was stroke that I suddenly had a hard time to read and make out letters aswell as being blinded by even the dimmed light of my monitor.
Long story short I opt for sick leave visit an ER get misdiagnosed with “You just need glasses” and bvisously now I had to get back the ER because glasses do not fix broken apart white matter and I ended up in a dark hospital room with my my neuro and A brain covered in white and black dots In fact two, turn out to be very big dots,
which both happen to sit on part of the optic nerve each.It is pseudo tumoral multiple sclerosis.
one of those two dots stops growing after 5 days of plasma exchange the second one grew to +- 12cm at its largest diameter and did only stop growing after 10 more days of plasma exchange.
I am happy that it stopped growing of course but most of the damage was aalready done… still is.
I still have blurry vision, photophobia and color distrotions, well on one side of my visual field, at tleast the one i can still see.
Homomymes heimnopsia to is a bitch pardon my french but seing only half a face when looking at someone sucks. Nothing i cannot get used to of course but from going from “normal” to this in a somewhat short amount of time, uncertainty about work, my future I guess we have all been there.
I was able to start rehabilitation a few weeks ago.
The sport helps, being in contact with other people helps too. I was mostly isolated at home once i got back, so this is nice for a change.
I still am undergoing a bunch of cognitive and bladder tests but things seem to have become quite at last.
I was waiting to finish dome vaccines to start Ocrevus but well that fell into the water I did not see that coming.
Back to the waiting game i guess
Browse categories and add by clicking on them
You can remove current categories below by clicking the ‘x’.