Last reply 3 days ago
New .Had the urge to share a few things

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

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stumbler
2 months ago

Hi @yyual and welcome.

We all get challenged by MS and now everyone is being challenged with the Corona Virus.

Let’s hope that normal life, well as normal as it gets, can soon resume……


stumbler
2 months ago

Hi @yyual and welcome.

We all get challenged by MS and now everyone is being challenged with the Corona Virus.

Let’s hope that normal life, well as normal as it gets, can soon resume……


vixen
2 months ago

Hi @yyual, getting a diagnosis is pretty rubbish. It’s a horrible thing to go through. But now you must focus on rehabilitation and recovery. The search box on here is really useful for tapping into past conversations and advice on lots of subjects. This site is full of stories from people who have found a way to get through this diagnosis and have full lives the other side of it. Keep going, and stay strong


watsoncraig
2 months ago

Hi @yyual welcome to the group


watsoncraig
6 days ago

Hi 👋


stumbler
6 days ago

DO NOT RESPOND TO THE EMAIL ABOVE. IT’S A SPAMMER/SCAMMER!


geee_h
6 days ago

@vixen & @ Yuall ,True.
Around Christmas I came out of a hellish time with Trigeminal Neuralgia, which is thought to be my first manifestation of MS and was only cured by gamma knife surgery (second time around)…since then I’ve had what I can only assume is a relapse and balance and fatigue/breathless issues.
Physio and Repeat M.R.I were put in place but now on hold due to pandemic.
I don’t yet know for definite what I have …or if I can claw some of my functionality back and each day I get more frustrated with what( I can’t do..used to be into extreme sports!!
The “waiting game” sounds a bit flippant when your ability to function normally is at stake.
I hope you get timely and positive treatment. All the best.
The gamma knife has also effected my vision so. Sorry for spelling errors.


yyual
3 days ago

as I saw some activity here, I wanted to give an Update on my situation. News have been bad and good alike. First the bad. I was told that most of the damage is parmanent and I hope tough, that my brain will still be able to recover at least from some of the damage.
The good is, that I have been declared NEDA. I have since started on Tecfidera and am On week 8 without any persisting side effects which is very nice I suppose. As for my Vision there were some small improvments on the light sensitivity and green color distortion, even tough minor, it still represents an improvemt to quality of life.

@geee_h That Radiosurgery sounds paticular rough. was this some sort of a last resort? Did you try Plasma exchange or Chemo, to stop the relapse first?
As for your phsysio i am in the same boat as you are. My local rehabiliation has been closed until the pandamic is over….

Maybe I am too negative sometimes but being patiant has never been my strength. I am too am wondering what can recover and what not. But we cannot tell. Nobody can. We can just wait and try to adapt to the current tituation as best as we can. I am sure it smust be hard tough, to be going from being very active to very much less so. How do you keep yourself busy now?

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