I Have A Question

[hairbrain4]

I have a question. But first the reason for the question... I have been having problems with my eyes. I am seeing little snapshots of parts of what I am looking at or just looked. It's like a nano second of time & it's gone. It's appears in either eye at different places. It's kind of like the eye exam in the machine that tests your peripheral vision. I have had my eyes looked at & there is no optical nerve damage. Doc said it must be coming from the brain. I haven't had a chance to talk to my Neuro about it yet but will soon. I have had a flair at least once a week. I'm on Ocrevus, which hasn't helped me at all since the last infusion, which had been very disappointing since it has worked so well for a year & a half. My last infusion was at the end of April. So the question is... Have any of you had this sort of thing happen to your eyes?

[twooldcrows]

i have things that come and go at times and have talked to the eye doctor but not to concerned they have look more closely at my eyes and not seeing anything new going on...sometimes i feel like it is part of what is in the air around me ...don't know how to describe it just is weird ...like when i am out side on the porch and looking around the yard as the dog is doing his chores and it is like a reflection of something ...it is just weird ....i have been on Ocrevus since it coming out and i will keep taking it i feel it is doing the most good ...take care and talk to your neuro....love and much happiness...take care and enjoy life...

[hairbrain4 in reply to twooldcrows]

Thank you!

[Jer29-11]

I’m sorry the ocrevus hasn’t been working for you! In response to your question, I’ve had some weird things going on with my eyes too...honestly I can’t really explain. I actually thought there was something wrong a few months back and made an appt with my MS neuro. There was nothing and had an MRI with no changes and stable disease. I was really worried because my eyes have not been affected with MS as of yet, but I guess like you said, something with my brain 🤷‍♀️. It only lasted a few weeks and now I’m back to “normal.” Hopefully yours will resolve soon too!

[hairbrain4 in reply to Jer29-11]

Thanks!

[NanaCC]

Eye issues were one of the first of many symptoms I chalked up to be menopause. My left eye more than my right. I had optometrist check finding no issues. I experienced color differences and once in a while I could read nothing for a minute or so. Very scary stuff. Some wise person told me to log these types of events on a calendar if it’s repeating for a few days I call dr. The log helps me realize that these are blips along the way but not necessarily the start of a relapse. Are you going to switch off Ocrevus? If so what, I am at 5 month intervals and am not feeling it’s enough, curious what people try next.

[hairbrain4 in reply to NanaCC]

I've been on Ocrevus since April 2019. I have great results except for the last 2 infusions. The last one seems like it isn't working at all * the one before it seemed to run out at 4 months. The previous ones lasted about 5 1/2 months. I have had several things happen within 2 months of each infusion & have documented everything. So I am probably going to stop Ocrevus. I'm not sure what I will go to next. Kesimpta sounds like a good thing but it has heart-related side effects so I'm not sure what I will do. I'm going to have to talk to my neuro about it

[NanaCC in reply to hairbrain4]

Please keep me posted if change and to what. I had new lesion back June I’m now on 5 month next infusion is October but I am already feeling off. Spine lesions affecting my temperature and feeling in my hands and a new terrible hip pain which ortho think it’s bursitis. I’m a computer person for work my hands are everything I’m so afraid and now this fear is making me deeply depressed. Don’t know how to come out of it, went to pill pushing talk dr didn’t like her looking for someone to talk to not push meds to make me drowsy. Sorry for rant just feeling hopeless

[hairbrain4 in reply to NanaCC]

Go ahead & rant I did! It does help. I know it's frustrating but we have to be strong & not let it get the best of us. I finally came to the conclusion... it is what it is, what can I do to make it better? I don't always like my answer... eat right, stay fit & keep a positive attitude. But that does work, it's just hard sometimes when you feel like you can't get a break. Prayers going up for you!

[erash]

I wonder if you have nystagmus causing this?

[hairbrain4 in reply to erash]

I wasn't sure what that was & looked it up. My symptoms don't match what I read. Mine is more like a picture in a picture that flashes for just an instant. Rather than my eyes rapidly moving.

[JTZES]

You certainly have had an exacerbation that effected your site. I would request a MRI of my neurologist. If it shows a new lesion then the Ocrevus is not working for you and you need to change DMT'S. I know the FDA has approved several new medications over the past year. I am doing well on Ocrevus so I haven't researched them. Good luck with things.

[hairbrain4 in reply to JTZES]

It's sad cuz Ocrevus was working so well for me the first year & then gradually it quit. I did have an MRI that didn't show any changes or new lesions. I'm definitely having flare ups. But this eye thing is new.

[JTZES in reply to hairbrain4]

Make sure your not running a fever. If the Ocrevus has been working. You could have an infection

[hairbrain4 in reply to JTZES]

No fever or infection. Just MS trying to get the best of me but it won't. I have an appt with my neuro Wednesday.

[JTZES]

You certainly may have had a exacerbation.

[Goldilockssearching]

I have not had the specific issue you are talking about but I do have problems daily with my eyes. Ophthalmologist checked and cleared. The conclusion and probably some thing neurological going on and or dry eyes acting up which I’ve had for years. I see my optometrist on Monday and will further check if my vision has changed since I saw her last or the possibility of needing different types of prescriptions. Hopefully you were able to get some answers. It is definitely very frustrating.

[hairbrain4 in reply to Goldilockssearching]

Yes it's frustrating. I also have the dry eye thing due to medications.

[MarkUpnorth]

With M.S., I'm not sure which I've seen more, the Neurologists, or the Ophthalmologists. It started with optic neuritis, and that came and went 7x for me. All the normal eye issues, but never saw your issue. Did have my vision scroll everything I saw, non-stop, like a broken tv of yesteryear, when you had to finely adjust the vertical hold as the tubes got older to keep the screen from rolling up, first just a little, then nonstop. It was just like that. Annoying!!! No way I could drive with that. Lived with it for the typical month to month and a half, like everything else. Kept working, with a personal chauffeur (my wife), getting me all over the city on time. I was on Avonex, or Rebif at the time? See the doc's. The optic neuritis was definitely an eye thing related to the M.S. that could be explained. The rest? Not so much. Only thoughts.

[hairbrain4 in reply to MarkUpnorth]

When it first started I immediately though optic neuritis. But my optic nerves are in good shape. So this is coming from the brain somewhere. I'll be talking to my Neuro about it.

[mrsmike9]

Only after a bright light has been in my eyes. When I would blink I could for a moment see the light. I gather what you're seeing must be seeing, just not bright.

Please talk more with your neuro. You should not be having relapses like that either!!

[hairbrain4 in reply to mrsmike9]

I totally agree! I will be talking to my Neuro. She is in the process of moving right now & I'm on the call list as soon as they are done moving & setting things up.

[Tazmanian]

Good luck I hope it is better soon

[hairbrain4 in reply to Tazmanian]

Thank you!

[mm1527mm]

Sorry to hear. Hope it gets better quickly

[hairbrain4 in reply to mm1527mm]

Thank you!