MS Vision Problems other than ON...

[Chicken Mama]

Hello Everyone,

I read a lot here, and mostly just lurk. I have not been diagnosed. Last Fall, I had an episode with my right leg going numb from the bottom of the calf down, and foot drop as well as some vision problems (blurriness in one eye...like vaseline, but that went away). Those spurred me on to go to the Neuro. I have had some other symptoms recently as well as some for years: urinary frequency and urgency, extreme fatigue, mild balance issues, speech problems, cognitive issues, worsening symptoms with heat, etc. Since they come and go, I haven't been really concerned.

Some I have gone to the doctor for, and was blown off. The numb leg and vision problem scared me. Went to the Neuro and he found clinical signs that something was wrong. Did an MRI, found 15-20 lesions non-classic shape or location for MS (bi-frontal lobes/subcortical). Did a spinal tap, no O-bands. No lesions on spine. Blood Tests turned up nothing else. Doc told me he feels it was a 'one-time mild infection' on my brain (don't remember being sick with flu or anything else in recent years) and said he believed the lesions are causing my symptoms and signs, and that it was 'MS-like' but not progressive.

I will have a follow-up 6 month MRI to re-check this summer. He sent me to an Eye Doc, and Eye Doc said it's not Optic Neuritis (although before I went to the Neuro, I went to my Walmart Optometrist for the blurriness/vaseline issue and he asked me if I had MS, but said maybe it was stress. He never mentioned ON). With the new Optho I was referred to, he said I have very dry eyes (not Sjogren's). Put in plugs and I'm doing eye drops and in that regard, they are much better. Field Vision Test normal.

My question to you all is besides Diplopia, Nystagmus and all the other 'listed' eye issues with MS, can vision be constantly changing just because you have an MS-like disease? He finds nothing wrong with my eye ball, or the optic nerve, but my vision keeps changing. I've been in about every week to two weeks to get my vision checked because I'm trying to get progressive bi-focals and I can't see at the computer distance. This will be the third time they are remaking the lenses. Distance vision even changed from the week before to yesterday. Both near and distance vision have changed about three times. Opthamologist doesn't seem concerned about this. I feel like I'm going crazy and I fear that I look crazy, and that they hate to see me coming back.

My other question is...if we can have spasticity in the legs (and I have) is it possible that other muscles around the eye could constantly be flexing and distort vision? Maybe this is a crazy thought, but I'm grasping at straws here. I do have astigmatism and it's getting worse, but I didn't think that could change from week to week.

Sometimes, my left shoulder knots up, and I get a headache on the left side (side I have vision problems on), but it doesn't always happen at the same time. I have a lot of headaches, but not migraine. No flashes of light.

Optho has seemed to 'blow off' the fact that I have lesions on my brain when I told him Neuro said it wasn't MS, but demyelinating (sheesh, it's rough to be 'non-specific' but have almost every single MS symptom in the books)...but he did do the Field Vision Test and it was normal.

Thanks for reading this long post. Any input is greatly appreciated.

[Justsayyes]

I know others here are way more experienced and knowledgable about eye problems, so take my comments as just my experience.

My second symptom after numbness in my leg was blurry vision. Opthamologist said dry eye. I passed the visual field test twice. He put me on antibiotics and had me doing warm compresses (which caused my vision to blur more temporarily). He yelled at me when he couldn't correct my vision saying I "wasn't trying hard enough".

I don't wear glasses, so I just went on coping with the visual problems. Months later I had a visual evoked potential test that showed abnormal results. Some cases of ON cannot be seen on visual exam, I believe the term is retrobulbar optic neuritis.

Now I'm not saying this is what is going on with you, but your story sounds similar to mine. I might get a second opinion on the visual problems. My optho totally missed a correct diagnosis. I had another bout of ON in the other eye a year later.

[Chicken Mama]

Thank you, JustSayYes. I'm sorry that happened to you. It's really a frustrating experience to know something is not right, and have a doctor not take it seriously, or blame it on you.

I understand that no one here is a doctor. I'm just looking for any input or clues, or to be pointed in a direction to search, and I greatly appreciate you sharing your experience. It helps to know that similar things have happened to other people. I also appreciate your suggestion to get a second opinion. I'm beginning to think the same thing.

If I do go to another eye doc, it will actually be my THIRD. The first was the Walmart Optometrist. The second one was an Optho and said I had possible cataracts and a possible dark spot on my retina and dry eyes. He was also mapping my cornea. He wanted to treat the dry eyes first. On the third visit, I asked him if he was still thinking it could be the first two things mentioned, and he asked me to 'be patient'...he was going to treat the dry eyes first no other explanation.

I left after that...I mean...I could go months and months putting drops in my eyes and unfortunately, those co-payments add up quickly. I also knew that the cataract and dark spot thing just didn't sound right, because the optometrist would have have seen that...he checks for those things and takes pictures of my eyes and can show if you have any underlying diseases showing up in your eyes. Granted, he's just an Optometrist, but I trusted him, and he's very thorough.

So then, on to Optho (Doctor number 3) who said I have dry eyes, no cataracts, no dark spots on my retina, but my vision is still jacked up off and on.

I'm so frustrated.

Thanks again for your input. I forgot to mention that I am 47 years old.

[Justsayyes]

Hopefully more evidence of what is going on with you will surface. Hang in there! I was 48 when all this started for me, well actually 47 when I first noticed something was going on. We have that in common!

[Redwings]

if we can have spasticity in the legs (and I have) is it possible that other muscles around the eye could constantly be flexing and distort vision? Maybe this is a crazy thought, but I'm grasping at straws here.

Hi Chicken Mama:
Sorry to hear you're having so much trouble with your vision. But to use your own description, yes, that is a crazy thought. The eye itself is relatively rigid so the eye muscles have something they can pull against, and it doesn't change focus by the muscles outside and around it flexing it like it's made of Silly Putty. Very creative idea, though.

It would be nice if there were a simple answer, but most of what you've described isn't typical of MS. Blurry vision can have many causes. In MS, optic neuritis is a concern. And because of people's awareness of it, the tendency is to attribute every case of blurry vision in a person with MS -- or suspected MS -- to optic neuritis. But that ignores all of the numerous other causes of blurry vision, which don't have anything to do with MS.

In MS, there are two categories of things that can happen. One is inflammation of the eye and optic nerve (e.g., uveitis and optic neuritis) and the other is dysfunction of eye movement (motility) due to nerve damage in the brain (e.g., nystagmus and nerve palsies that cause diplopia). Since your visual field is normal, I won't go into that.

The important thing to note here is that none of those affect the refractive (light bending) elements of the eye. That means that none of them affect a person's glasses prescription. If your refraction is frequently changing, MS (or an MS-like disease) is not the cause.

The primary suspect in frequent changes of refraction is fluctuating blood sugar. I'm surprised that your ophthalmologist hasn't recommended that you have your blood glucose tested a couple of times (that's regardless that blood tests at the neurologist may have all been normal at the time).

This is a critical point about vision -- and the most difficult to understand: there's a difference between refractive error and the eyes/brain's ability to "see." Blurry vision can be caused by either one or both of those. If blurry vision is caused by a physical problem that affects the acquisition of light or the transmission of electrical signals, changing refraction won't have any effect. (That's why glasses don't fix blindness.) If changing refraction changes (ideally, improves) vision, that's a sign that the blur isn't from physical damage in the eye.

Constantly changing vision requires that both physical and refractive elements be investigated. And this is a good time to bring up dry eye. Dry eye is a common problem in general, and is even more common in folks with autoimmune conditions. Dry eye is unique in that vision can blur and clear in literally the blink of an eye. So it's good that you've had your dry eye condition addressed. It isn't a contributor to fluctuating refractive error, but it is an element that must be controlled to allow other factors to be worked through. Then you can start investigating for other causes of blurry vision that are physical and not refractive.

The other element that has to be accounted for is your progressive bifocals. The optics of progressive lenses can be complex (I wear a progressive myself), and progressives add variables that can be a hindrance when trying to figure out why vision is changing. If the progressives are causing optical issues, it can be very difficult to separate which issues are being caused by the glasses and which are being caused by your own visual system. No wonder you can't tell what's going on!

The impression I'm getting is that your neurologist sent you to a general ophthalmologist. That's great for getting the basics of eye health (including dry eye) evaluated and treated, and for dealing with refractive issues. But it sounds like your ophthalmologist isn't going beyond the basics. So it might be of benefit for you to be seen by a neuro-ophthalmologist. Most neuro-ophths accept patients by referral only, so you might consider asking your neurologist for a referral.

Again, I wish there were a quick and simple answer to your visual troubles, but there isn't. Your situation is complicated, so it will take a while to work through it. Try not to get discouraged in the process.

[FL_Jhawk]

I have had some eye issues and had a similiar experience with you. The optho said everything looked fine but that I needed to use OTC eye drops for dryness. She sampled me with Systane Ultra. I have to admit I have barely used it.

I don't know why your vision changes a bit but I would think an opthomologist would be aware of any eye diseases that would cause such a problem. But, with MS or whatever it is you have, nerve damage in the brain can alter what you see to some extent, or maybe rather how you see it. I know I sometimes see things in what I can only describe as being metalic in appearance. I also sometimes feel like my field of vision in a particular direction is off but, again, the doc said it was normal.

But, be glad the eye itself is healthy.

[Chicken Mama]

Redwings,I have been told before that I have a vivid imagination. Believe it or not, I do appreciate you confirming that it was indeed a crazy thought.

Thank you for that detailed and thorough reply. It makes a lot of sense. I wish that my Doctors were as thorough. You've given me a lot to think about, and you have cleared up some things I hadn't been able to put together and grasp completely.

I'm not more than 5-10 pounds overweight, and I generally eat low carb/low sugar, and I try to stay off wheat, as I think my face gets puffy and I feel bad when I do eat it, so I haven't been too concerned about diabetes, or getting my blood sugar tested, but blood sugar has crossed my mind so I'll be thinking about what you said.

He did say my ANA was kind of high (I don't understand what all of that entails) but I didn't test positive for Lupus or any of the other things. The first Opth. had me on Restasis for the dry eyes, which I think is an anti-rejection type thing which would make me think that the assumption was that my dry eyes was because of inflammation in the tear ducts. I might have read that somewhere, but that might also be a product of my vivid imagination, too.

I've also considered checking out a Neuro Opthathalmologist and maybe you've spurred me on to check one out. There is a good one here that the MS society recommended close to where I live. I checked the website and the initial visit is several hours long and it listed all of the tests they do that check the Neurolgoical aspect of the eyes...so maybe you have spurred me on to check that out further.

Yeah, it's hard not to get discouraged, but I'm trying not to. It helps just to be able to talk about it and get some feedback with people who have had similar issues.

Thank you again for your response. It helps me so much when I understand how things work.

Yes, JHawk. I really am glad my eyeball itself is okay. When I get really frustrated I tell myself that I'm glad I'm not going blind. I really shouldn't be complaining so much. I'm just frustrated with the time, expense and always having these kinds of experiences where I don't think I'm being understood by my doctor (and probably vice versa, who knows). I do think this Opth. is a good one...I just can't wrap my head around why I'm having this problem and the Doc doesn't think there is anything wrong. Thank you for responding to my question. I appreciate it.

Thank you, JustSayYes. It's a difficult position to be in, being in Limbo. I'm trying not to think of it as being in 'limbo' since the Doc told me it was a one-time deal, but he is going to do another MRI to see if there are more lesions, so.... Of course I want it not to be MS, but it would be so nice to have a name for all of the crazy symptoms. People understand MS, they don't understand 'non-specific lesions'...even if you tell them it's just like having MS, but the doctor doesn't think it's progressive at this time.

[techie]

lined bifocals

I know they aren't as good looking as progressives but they have less distortion.
If you are having problems with your eyes anyway these will help.
techie