This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone! I haven't been on this forum in a long time, but I found it again recently and have been trying to catch up on the all the news about CCSVI. It's been really interesting reading! I sure hope we get more neuros and other docs working on it soon.

I have a problem and question for the group. About 3 and 1/2 weeks ago I realized by left eye was getting pretty blurry. It continued getting worse for 3 days then shut down completely. My opthamologist called it clinical optic neuritis (I have never had ON before) and he did an MRI because he couldn't see anything from the front. The radiologist in his report said he saw small areas of enchancement, but my neurologist looked at the films and couldn't see anything. However, he agreed that it seemed to be ON. I ended up taking 6 doses of 1g solumedrol.

I just saw the opthamologist again this morning and I have had no return of vision. He is concerned because he feels like the steroids should have kicked in by now and also, that with ON, I should have eye pain and headaches, and I don't have either. He is now questioning the original diagnosis and planning for me to have a CT arteriograph (?) or an MRA to see if I have an arterial blockage. He says I am too young for this to be the problem (49) but, about 2 weeks before I went blind, I had a bulging vein in my forehead just above my left eye. When I told him that he said that is definitely an arterial related problem.

Anyway, I guess my question is has anyone else had a similar problem? Has anyone else had ON that didn't respond to steroids for a while, but kicked in later? Any help with this would be great! Although I am able to function with only one eye, it feels really weird and I would really like to get the sight back as quickly as possible. BTW, I am not having any other MS symptoms. The MRI did show some lesions but my neuro says they are all old ones and he saw no enhancement.

Any thoughts or ideas would be great. Thanks in advance!

Kathryn

my wife had ON, left eye only. She went from 20/20 to completely blind over one week. Never any pain whatsoever. No improvement for the 1st 6 weeks, which included an IV steroid cycle and a few weeks of oral steroids. At 6 weeks, the huge blind spot that had developed began to shrink. At 8 weeks, she was 20/200(just legally blind). At 16 weeks, she was 20/40. Colors are still, and we think likely to remain, a bit washed out. She feels that her acuity isn't back 100% but that she is still making small gains. We are at 21 weeks right now and, generally, it is no longer considered an issue.

Thanks, mose, for your quick response. It does sound like my situation is very similar to your wife's. It's good to know that she has recovered most of her sight. I hope her color vision continues to improve.

I guess I'm so used to steroids kicking in pretty quickly that having no response in 3 weeks seems like such a long time. However, if it took your wife 6 weeks, I will just try to be patient. Thanks again.

Kathryn

we were really concerned as well. My wife also had a slight bit of tingling in the arms/legs(with no loss of strength/coordination and no loss of sensitivity). Steroids knocked that out in 2 days. Fastfast.

The ON clearing up felt totally unrelated to the steroids. It just did its own thing, but when it started coming back it came back in big bites at a time.

Kathryn,

Is your vision completely gone, as in no light perception at all?

Sorry to wait so long to respond EyeDoc. I've been out of town, away from a computer. I would say that my vision is 98% gone, in that I don't have any vision but I can just make out changes in light if I cover my right eye really well, then wave my fingers directly in front of my left eye. As long as I am closer than about 4 inches, I can see a light change. Beyond that, I still see nothing.

My opthamologist has set me up to have an MRA on Friday, as he is not 100% convinced this is optic neuritis, since I am not having any significant pain, and he expected the 6 doses of IV steroids to have given me some improvement by now.

Your input would be greatly appreciated. Thanks!

Kathryn

Kathryn...so sorry.
As long as you are having the MRA (viewing of the arteries in)- could they have a look at the veins out, as well (MRV?)
My hubby lost peripheral vision in both his eyes as a child, and the only connection we've found has been his occluded jugular veins and optic disc pressure-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi cheer, thanks. I've been very interested in CCSVI since reading yours and others posts. I do intend to ask the technician to look at my jugular veins if he can. I remember reading one of the CCSVI papers (and trying to understand all the medical terms!) where the doctor mentioned he saw the reflux of the jugular when the patient inadvertently coughed during an MRA (or it might have been a CT angiogram). I'm going to mention this to the tech and see if he can check for this too. However, I really don't know what an MRA even is and it may not be that simple for him to do this.

I definitely want to talk to my neuro about CCSVI but he tends to dismiss the newest things until they are tried and proven. However, he's a really good doctor and I like him alot, so it would be great to talk to him about CCSVI with further ammunition, i.e., results showing jugular reflux or backflow. I will know more after Friday.

Another quick question - my neuro suggested doing 2 more IV solumedrol since I've had no improvement but the opthamologist thinks 6 is plenty, that 2 more wouldn't help. I personally don't have too many problems with the steroids so it wouldn't bother me to have more, but I don't want to if it's not worthwhile. What do you think? Thanks!

Hi Kathryn,



That sort of seems like a loaded assumption. By that I mean what is significant pain? When I fractured my wrist or shut a car door on my finger that was certainly significant pain. However, when I had optic neuritis, I just had some pressure behind my eye which was annoying (and maybe felt a little sore) but not really painful.



That might be a better measure. The IV steroids that I received helped me regain some of my eyesight back after a few of days. You said that you have lost your eyesight, but what does it look like when you look out of the affected eye? Is it just dark or is it hazy? When I had optic neuritis, my vision was clouded over in one eye but I could still perceive light and colors. It was like I had just opened up a hot dishwasher after it was done running and only one side of my glasses fogged over and stayed that way. I should note that I experienced slow, gradual improvements in my vision for a week or two afterwards. In addition, my eye remained heat sensitive for several months afterwards. For example, it would cloud over again temporarily if I took a shower that was too hot or spent too much time out on a hot day.

NHE

Thanks for the response NHE.

By significant pain the ophthamologist expected me to have a painful eye with movement and at least some head pain around the eye. I have occasional minor pangs of pain but nothing that lasts. He is also concerned because I haven't had any improvement in vision since beginning steroid therapy about 3 1/2 weeks ago.

As to my vision loss, I cannot see out of the left eye except for a slight change in light (light filtering thru, I guess) when I wave my hand about 4 inches or closer to my eye.

I wouldn't be testing for other diagnoses if I had any improvement from the steroids, because it does make sense for this to be optic neuritis. However, I haven't had it before so I have nothing to compare it to. Also, my MRI showed no enhancement of lesions, and the optic nerve was not inflamed on the MRI or the doctor's examination from the front of the eye. The diagnosis of optic neuritis was strictly clinical.

Any thoughts about further steroids? Thanks.

Kathryn

Your vision deficit seems to be more severe than optic neuritis. Also, no inflammation on the nerve with MRI or direct observation and no pain really tends to take ON off the table. Of course, nothing is 100%.

Your eyedoc is looking for any signs of occlusion to the artery that supplies the retina. A patient can have a central retinal artery occlusion that will severely limit vision yet show very few signs clinically when looking at the retina. Eventually, the retina wil take on a certain appearance, but it can take time. If you had a vein occlusion there would be telltale signs, including bleeding on the retina. One really can't miss that.

So I would think the extra steroid treatment will be superfluous. If there was inflammation of the nerve it should have been on the road to recovery already with the treatments you received.

From reading what you have described I would not call this optic neuritis. I wish I could tell you what it is for sure, but there is not enough information yet. Just continue on with your testing and let us know the results. Good luck! I hope your vision comes back.

Thanks, EyeDoc, for your response. The opthamologist believes if I have ON, it is atypical, and that's why he's doing more tests. I will hopefully know more on Friday, or it may be next week before I hear the results.

In the meantime, my neuro wants me to consider taking additional treatment besides Copaxone, such as novantrone (I have taken this before but still have 3 doses left), imuran, or methotrexate. I told him I would research it more and tell him what I wanted to do in 2 weeks when I see him again. I just don't want to jump into anything more, especially if this isn't ON and then might not even be MS related.

I will post an update as soon as I know more. Thanks again.

Kathryn