u/Mammoth-Essay-5476

My eyes have always been sensitive to light, even before my MS diagnosis. But it wasn't anything out of the ordinary, just mild discomfort depending on the situation.

However, since last month I've started experiencing extreme photophobia that is incapacitating me. Any type of light makes my eyes burn. White light and LED lights are the worst. I'm having to wear sunglasses 24 hours a day, even indoors.

A neuro-ophthalmologist examined my eyes and found nothing wrong. It's not dry eye, uveitis, glaucoma, or ON.

I think it's important to state that these symptoms started exactly two days after I began taking modafinil for fatigue, prescribed by my neurologist. I researched online and saw that migraines and visual problems are a common side effect of modafinil. But it's been several weeks since I stopped taking it and the extreme light sensitivity persists.

Finally, I went back to my neurologist. He wasn't sure if it's a migraine, but he's treating it as if it were. He prescribed venlafaxine (effexor) to treat this hypersensitivity, but I haven't noticed any improvement yet.

I'm not sure if it's a migraine because I don't feel any headache or aura. The discomfort also doesn't occur in attacks as is characteristic of a migraine. I only feel this sensitivity to extreme light all the time. Right now, to write this text, I'm having to wear sunglasses and I had to keep the computer screen brightness at the minimum.

I'm glad it's not optic neuritis, but I feel blind. Having my vision so impacted in this way greatly affects my cognition.

PS: Before anyone mentions FL-41 lenses, I'm using them now and they help a little, but sometimes the discomfort from light is so intense that even these lenses aren't enough.

My eyes have always been very sensitive to light, even before my MS diagnosis. I've never liked LED lights and have always watched TV with the brightness at the lowest.

In recent months, my eyesight has become more strained. I've had to increase the font size on my computer and phone because it's become more difficult to read small letters. My glasses prescription hasn't changed, and I've never had optic neuritis according to my exams.

But the light sensitivity has worsened significantly in the last week. I've been feeling a horrible heaviness in the back of my eyes. I'm having to wear sunglasses even indoors; the light hurts my eyes.

I'm very worried because I work in front of computers, but the photophobia makes looking at a computer screen a torture even using sunglasses.

I don't feel like what I'm experiencing is optic neuritis because I'm not having any visual changes besides the photophobia, and I had an OCT scan this week, and everything is normal with my optic nerve.

Does anyone else here also have extreme light sensitivity? Will it eventually improve? Because for me, it's only gotten worse. Will I have to wear sunglasses indoor for the rest of my life?

I had a flare-up early in the year that sapped the strength from my legs, leaving me needing a cane to walk and a stool to shower. I can’t run anymore, either.

After several rounds of steroids, I feel like I’ve improved a bit. The Ocrevus I started recently is doing its job of stabilizing the situation and keeping things from getting worse.

I’m already doing PT and have noticed progress during the sessions.

Last week, for instance, I was able to walk outside and even went to the pharmacy near my home. But today I woke up with such tired legs that I had to sit down to shower again. Walking outside? Forget about it.

It’s not the first time this has happened—having wonderful weeks where my legs work well, only to suddenly wake up one day and find them back at square one.

I think I fooled myself into believing that rehabilitation after a flare-up affecting mobility would be a linear process, but it’s more like a rollercoaster.

Every time I experience this sudden setback, I feel anxious about the future. Is this going to be my new normal from now on? I used to run marathons in the past. Will I be able to run again?

I made this post a few day ago about my situation: https://www.reddit.com/r/MultipleSclerosis/s/fINqazm0LJ

It's been a week since my last round of steroids at the hospital, and my legs continue to get weaker every day. But since yesterday, the weakness has worsened so much that I can no longer put my feet on the ground without falling. If I stand for more than 30 seconds, my legs give way. I was using a cane till yesterday but now I need a walker.

My neurologist was very clear: any worsening of symptoms, I should return to the ER immediately for evaluation. However, I know his course of action will be to do another round of steroids, and I don't feel comfortable taking so many steroids because of the risks of osteoporosis and diabetes (I’m already at pre-diabetes) And I've already done 3 rounds of steroids this year, and none of them was able to stop the worsening of my symptoms. I would love to have plasmapheresis, but my first dose of Ocrevus was 3 weeks ago, so Plex wouldn't be an option according to my neurologist because it would remove the Ocrevus from my body.

What would you do in my place? Should I go to hospital for a fourth round of steroids?