Vision issues?

[ADavid]

Last week suddenly started seeing flashes of light then got cloudy vision in my right eye. Saw an opthalmalogist and learned I'd suffered a torn retina. He said it was due to "vitreous detachment" that pulled away from my retina, tearing it. Immediately had laser surgery to repair it and vision is improving. He said he didn't think this was an MS flare up. Called my neuro, he said the same thing. Just an unfortunate coincidence, but totally unrelated to MS.

But I can't help but wonder if there is a connection, or, is this a rare side effect of Tysabri? I'm a brand new Tysabri patient, just 4 infusions, and while I like the drug, it seems to help me, it makes me nervous, what with all the PML risk, what else is it doing to me? I mean, just a spontaneous retinal tear? I wasn't hit in the eye, wasn't doing anything abnormal, just suddenly happened. Wondering if anyone's experienced this too or heard of it, or maybe I'm just paranoid about the drug...

[LL60]

ADavid,

Sometimes stuff just happens.
Glad your vision is improving.

[ADavid]

Really LL60? C'mon, spare me the patronizing comments. I posted a legitimate question about a possible side effect of Tysabri. I know very few people that take this drug and this board offers the rare opportunity to compare notes. I don't need your grandmotherly type comments. I'm 45 yrs. old, no history of vision problems, started this drug 4 months ago and now have unexplained vision problems. Coincidence? Maybe, side effect, maybe, all I'm doing is trying to check w/ others that take this rare drug and see if they've experienced the same. I thought that was the purpose of this board, not to be ridiculed, which is how I take your pointless comment. Now go away.

[pnowsitall]

Don't try to take it personal. But, that wasn't the nicest comment, I agree. Kind of dry.

The vision problem sounds like possible optic neuritis. Does it hurt when you move your eye? Have you checked to see if your nerve is inflamed?

I had optic neuritis as my first flare, and it sounds pretty similar to what you are experiencing. Although I didn't have any bright lights, it was blurry first top half, then bottom half of my right eye, and then completely blurry with horrible pain in my eye.

I am not sure if it is due to the Tysabri. I take Rebif, and haven't had vision problems from it, just the occasional peripheral vision blinking, which I have had for a long time.

Please don't worry too much. It could be a side effect of the medication, or it could be a symptom of MS. Is your vision getting better now? Maybe steroids could help, as you may be having a flare up. Also, I heard that when you switch medications, that it could cause a flare up, or it could cause other symptoms.

Hang in there. If you ever want to reach out to me, feel free to visit my profile, and send an email. I feel the same way as you. This board is good, but it isn't the most consistent and helpful. I try to make as many posts as I can, only to see people not replying as much as I would like to see.

[emily06]

tear in retina

I had a tear in my retina several years ago. I have never taken Tysabri. I did have optic neuritis twice (so far - I was diagnosed with MS back in 1989). My opthomalogist said it was unrelated to MS. I have very poor vision - started wearing glasses at 6. Power -19 in one eye and -18 in the other. So I believe that was my reason for the tear (plus I've had RK surgery, cataract surgery and ALT.
I had a friend that took Tysabri and he did not get a tear in his retina.
By the way I had the injection in my eye and my vision returned. Best wishes to you.

[LL60]

so so sooo very sorry my comments were taken to be uncompassionate.
I just felt bad that no one had responded to you right away, yet I had nothing to offer. You had two doctors tell you it wasn't related. I was just reapeating that, that sometimes stuff happened.
But was so glad that treatment was working. My vision is my dearest thing to me of all the senses.

again, sorry.
I usually don't have a lot of offer, expect to share my own experience with Tysabri. And wasn't even sharing that. It was just a comment. And I am very very glad you vision is improving.

[sal]

Dear ADavid

I loooove that you let your anger show when you seemed to feel dismissed by another poster. So much of what happens to ME is out of my control. I am angry. A lot. And I'm a grandmother for heaven's sake. But looking at it from somebody else's perspective helped me understand why I'm angry. This disease just pisses me off. If someone sees me at the grocery store in an electric scooter because I'm having "Lurch Leg" (right one drags when I'm tired) they look very concerned while looking for a cast or brace. "Oh, my dear, how are you?" answered with "I'm fine" is not acceptable. I should tell them that I fell while skydiving.

I also have a problem with my Dr. right now. Goes beyond dismissed. I had a weird reaction while getting Tysabri last month. Half-way through the infusion, my nose started to get stuffy. To the point that I couldn't breath through it. I started to feel dizzy and really nauseous. They stood me up after stopping the infusion and my diastolic blood pressure dropped 10 points, with an open IV running (they gave me Zofran for the nausea). The nurse didn't think it was significant. Felt significant to me.

I have had a blood pressure, heart rate problem since the beginning with MS. The Dr. ordered the infusion stopped and the nurses said he was going to call back with a 'verdict' about getting any more infusions. I haven't heard from him. The drug company hasn't heard from him. And I'm SCARED to have another infusion, so I don't want to call him. I don't like feeling like someone's science experiment.

I was on Copaxone for 6 years. Then it tried to eat my left arm. I'm not what you would call trusting at this point. One time, I tried posting some of my problems on here and another poster told me to get off my 'pity pot'. Took me a long time to post anything else. I just want to feel like there is one 'safe' place to vent. It's not like we're airing dirty laundry here. For me, it's about being a flawed human being who deals with way more that anyone would believe.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[22cyclist]

Wow, sorry you had that reaction to Ty. I get dizzy with Ty and they slow my infusion to 2 hours each time I get them. I do get nauseous with the dizziness. The 2 hour time is much better. I also take Valium before the infusion and compazine to ward off any nausea and dizziness. I hope you will still be able to take it.

I am also sorry a fellow poster was not nice to you. You are allowed to come on here and vent all you want. That is what this board is for. Please don't let that keep you from posting. You can always write a note to the moderator that you are feeling this way to let us know what happened. We do not want anyone to feel intimidated on here.

I hope you feel better soon
Lisa
Moderation Team

[regi girl]

Vision Issues

ADavid, it's been a while since I've logged in to the forum. So this is a late response, but I have been on Tysabri for 8 months, and on my first and second infusion I had eye difficulty, (but I have optic neuritus from time to time with some optic nerve damage in my left eye) I had fashing white light like lightning bolts but only after the first two infusions, my Doctor called in steroids straight away.

Now after each infusion I have some eye symptoms such as "floaters" that they say is not related to MS at all but I'm sceptical since I have them some days and some days I don't. Also very blurry vision for a couple of days, but I have eye problems intermently also. Other things are much better though on Tysabri but the eyes, there is something going on there, but I feel that it's a trade off. I'm positive for JCV so I don't know how much longer I will stay on Ty. I think your question is a very good one and very odd to happen, in my opinion, without an injury of some kind. Yes "stuff" happens, but usually there's got to be a reason, so why did that happen?

[ADavid]

I overreacted a bit when I responded earlier. My vision is back to 20/20 and my retina is healed up. When I started losing vision in my right eye, I started to panic, then learned somehow my retina just tore, no reason. And all the docs said, nope, not MS, just a coincidence. I don't quite buy that, wondered, still do, if it was related to Tysabri. Guess I'll never know.

Now just back to dealing with the tysabri rash, which I'll gladly take over suddenly losing vision in an eye.

[blueflame30]

Hi -- FYI --I started Tysabri 3 months ago and retinal tears today

David--- what happened -- did you continue Tysabri? Just found out today I have tears I both right and left retinas.
I started Tysabri 3 months ago am the opthamologist told me that the scar tissue in my right eye is a few months old. Coincidence? Hmmmmm. I just turned 40 so it's not my age, and like you-- no trauma. No family history of blindness (except for mom who had presented with her ms as optic neuritis like me). So, I'm with you on this one. UpdAte please?