#optic neuritis - Shift.ms

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Optic Neuritis Experiences

Hi there! I'm Rachel, a 28yo who was diagnosed in July after a severe case of optic neuritis. It went diagnosed incorrectly for a week and over that week, my left eye vision became progressively worse, and eventually all grey/black, which I know is pretty rare for optic neuritis. I was hospitalize...

San Francisco, United States

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@Mikeontheroad

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Optic neuritis

I was diagnosed by chance because my regular optician discovered a thinning optical nerve in one eye and escalated it. 2 years of seeing specialist and a couple of MRI scans later I got the MS diagnosis. Optic nerve in one eye is bottomed out at 50%. However only symptoms for me is less vivid orange...

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@krystin00

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optic neuritis

has anybody had more than 1 bout of optic neuritis? i’m on my second round in less than a year.. first led to my MS diagnosis in december of 2024. spent the day in the er again starting steroid infusions again.

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6

@Jpetridish

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Hello, so I have a question or just want anyone’s opinion or help if possible please. I first had optic neuritis in 2021, was put on steroids and eventually got better but did leave some perminent damage. I had my first baby in 2023 and after I started to slow down breast feeding I started to get some interesting symptoms. Every morning my hands would be extremely itchy not like dry skin, but from the inside it was driving me insane it was every day and then I started getting random pain either on the top of my head like a bad bruise or on my back which I even thought was shingles, cause it was so painful to the lightest touch, but there was nothing there I even went to the doctor and in about a week that pain subsided The hand itching and the pain on my head continued though. In January I had noticed signs of optic neuritis happening again, but in my other eye, I went to the doctors right away and they had sent me to the emergency room. I was put on Iv steroids and got an MRI I was there for about four days. They saw some white matter lesions in my brain, but it wasn’t clear because of movement. They then did a spinal tap which came out clear. I had gone home and had to follow up with a neurologist about a week after I got home? I had horrible symptoms I was holding my child and my knees gave out my hands were hurting. I was twitching all the time I could not sit still it was worse when I was laying down at night my body just would not stop moving and at some point I could not feel my foot I felt like it was in an ice bucket. I was extremely tired, and I would get random goosebumps in blotches on my arms for no apparent reason I started getting some bad headaches too I then woke up one morning and I could not lift my left arm. It was like it was asleep. I would get pins and needles and different parts of my body also but the muscle weakness in my left arm was horrible. I could barely hold anything. It is still like this to this day, but not as bad if anybody came up and touched me without me, knowing my whole body would spaz out almost like my reflexes were on high drive I have seen three different neurologist since the first neurologist is convinced I have MS the other two which I actually liked better and our MS specialists keep saying I may have it. They did a repeat of my MRIs and again had some white manner lesions in my brain, but they were identical and not in the usual spots where MS lesions would be so they am holding off on fully diagnosing me and want to wait and repeat and see if there are new lesions in the following months. I have not been able to work since since I have a physical job I have good days and bad days if I get sunburn the very next day my hands feel like they’re in a vice. The pain is horrible. I want to know what everyone thinks do I have MS are they just trying to cover their butts and wait or what

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@lkr6

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Optic neuritis

Hello, looking for some words of wisdom, am fairly recently diagnosed (March this year) luckily symptoms have been fairly manageable so far. However Thursday morning I woke up without much sight in my right eye, trip to eye casualty later and diagnosis of optic neuritis. They’ve said it will heal it...

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19

@NadineBeck

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Is this optic neuritis?

I don't know if I'm over reacting/panicking, but Tuesday i had a grumbling headache, that twice gave me sharp pain to the right side of my head, grumbling very mild headache since. Yesterday I felt like there was 'jelly' in my right eye making sight a little off, but not awful, resolving after a f...

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@kawigma

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Anybody with Optic Neuritis?

Do you have optic neuritis? Do I? When I get tired, or stressed or sometimes neither. When I move my eyes I'll "hear" the movement. It's sounds like a whooshing noise. Makes me feel seasick and my eyes will ache. Mentioned it to ophthalmologist and he said he had never had anybody report that. I've ...

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3

@tiffduh

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Has anybody ever experienced Optic neuritis? If so what helped also extreme fatigue and weakness. What helped with that as well. I’ve been diagnosed with RRMS in 2022 l. This is my first bad flare up.

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@shiftmsmk

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Optic Neuritis

I’d love to hear people’s stories with optic neuritis. Like when did it start? Do you experience it with Uthoffs? How long? One of the major first symptoms I had was double vision. I got it after getting COVID. The double vision went away but I still experience brightness, especially when hot. If ...

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@HilaryP

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Yes I know about optic neuritis but I was interested in what an eye specialist can see when they examine the retina.

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18

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