Looking For Strategies

[NicCrig]

I'm in the midst of 2 overlapping episodes of optic neuritis. I had just finished a 5 day course of intravenous steroids followed by a 12 day course of oral prednisone and was starting to see improvements in my bilateral blurry vision when I had a second flare-up and I lost nearly all my sight in both eyes. I am wondering if anyone has some emotional as well as visual coping strategies they could suggest?

[RobLINY]

Hey NC! I'm really sorry you're going through this but just keep in mind, this too shall pass. I am still a baby with all this so I don't have any info on the science/medical front on all this. But when it comes to laughing, I'm the guy! Lol

Sometimes the smallest chuckle has helped me tremendously in dealing with all of this. I have been asked, more times than I can count, "How did this happen to you?" After a while I found myself saying the same thing over and over: It could be genetics, it could be environmental factors or poor diet and lifestyle choices (smoking, drinking and stress).

Now I just say, "It turns out I am one of the toughest guys on the planet and since there is no one left that's worthy enough to fight, my body has started fighting itself!" The laughter and reaction I get is enough to lighten the mood and steer me clear of the dreaded 'why me?' dead end venting.

I had optic neuritis last year, when I was still in doubt and without health insurance to do a damn thing about it, and it was "interesting" to say the least. It was as if my left eye was looking through a glass that had been emptied of milk... A cloudy, opaque haze fell over everything. It got worse over the course of a few days, stayed for a few days and then cleared up like nothing happened. I am left with slightly impaired vision, it's like there is a stigmatism in my eye, but glasses are dealing with that.

The main thing that helps me is constantly reminding myself that all this is temporary. All of this shall pass. This is not who or what I am. Yes this is me but this is me today. In a few more tomorrows I'll still be me just feeling a bit better each day.   Keep ya chin up! State of mind is everything!

[kwarendorf]

Good luck!

The steroids and the Rituxan have different goals. The steroids are aimed at reducing the inflammation of your current relapse. The Rituxan is aimed at preventing future relapses. It typically doesn't help with current sypmtoms.

Rituxan is a personal fave. I had the first infusion of my second course yesterday :-)

Kyle

[NicCrig]

Yes, just no LP. Supposed to start Rituxan tomorrow. ON is progressing daily at this point. I was able to convince the staff at my 2nd ER visit today to give me the IV steroids to tide me over til I start the Rituxan tomorrow, and I'm hoping to do both simultaneously. Wish me the best :)

[kwarendorf]

Unfortunately much of neurology is wait and see. This applies to both the resolution of symptoms and the diagnostic journey. Have you had MRI's, blood work, LP etc?

Kyle

[NicCrig]

Thanks! Both the opthalmologist and neurologist are saying it's a wait & see game at this point. I can't have anymore steroids, and there's no telling how much if any of my vision will return. My vision corrected to 20/40 with glasses within 6 months of my first ON episode in September 2013, but I didn't lose as much vision that time either.

[kwarendorf]

Hi NC - Welcome to the group.

I don't have any words of wisdom for you about optic neuritis. Just want you to know you can come here to vent . SOmetimess just saying these things can help :-) What are your docs telling you?

Kyle