So I saw Neuro again last week

[poeticsoul]

Hi again. Well, I saw my neuro last Monday. Went over everything with him, he did the usual neuro-workup again and I told him what my rheumatologist said about the MS maybe being back on the table and it being time to discuss with him (neuro) the serious possibility that I have MS.
He looks at me and says..."Cathy, MS has always been on the table" I was like... "Oh...okay then."

I told him about my recent issues with my eyes as well-mostly the right one, and how for the first time in over 12 years of taking Plaquenil, for Lupus, I had failed my Field Of Vision test in the right eye-areas of depressions and some blind spots, they said. And that I had to then see a retinal specialist asap because the worry was Plaquenil toxicity, which could lead to permanent blindness. So, did that and got a clean report. NO toxicity!! Thank God.

So neuro says..."And what turned out to be the reason for the field of vision problems?"
I was like..."Ummmmm...wow, I never asked. I was so happy to NOT be going blind and that I could go back to taking the Plaquenil-because its been keeping my Lupus quiet for some time now!" He's like..."They didn't say what caused you to fail the test?"
Ummm...no.
"Don't you think you should find out?"
Ummm...yeah, you are right, doc."
So then I told him the other issues I've been having with my vision/eyes-the pain in the right eye, the issue of colors being washed out, in the right eye only, as well as blurriness and flashes of light when I move my head-mostly in dim or dark areas/rooms.

He was quite concerned about all that and said I need to go back to the eye doc and ask about the field of vision test and he asked if I mentioned all these issues to my eye doc.
I told him, "No, because they sent me to see their retinal specialist right away because of the fear of toxicity happening. And that was it, saw the specialist and he said..."see you in 6 mths (for next FOV test)"

He was noting things down the entire time and said, "Well, I'm gonna send you for a repeat MRI of the brain and c-spine w and w/o contrast. And then you need to come back in for nerve testing of your feet/legs." (Oh joy-had that on my arms and hands last year!)

Soooo...I had the MRI this past Friday-the 18th and I go back to neuro on Dec 2nd for results and the EMG.

When I had gotten home, I looked up the issues with the eyes, since he seemed so interested and concerned and I was shocked to find out that in ON, people can fail their FOV test. Now I understand why he was so concerned about all that. Here I figured I passed the 'test' with the retinal specialist and that was it. Yet, honestly didn't consider the fact that I FAILED the FOV test!! Sure, the specialist checked my retinas with his fancy camera and all...and no toxicity. But yeah, I still FAILED the FOV test, didn't I?

Anyway, that's where it all stands right now.
Time...and results will tell, I guess.

Cathy

[Cat Mom]

On the flip side, I PASS the visual field test with my BLIND left eye... it only sees light and shadows... but sees enough light for me to pass.

I guess what I'm trying to say is try not to focus too much on one or two test results. I hope you get answers soon, good luck.

Jen

[MSer102]

A visual field test isn't a pass/fail test. It locates and quantifies abnormalities.

Having a normal part of a field doesn't mean that the entire field is normal, and just seeing something doesn't mean that a blind eye "passes" the test when the quantified results are grossly abnormal. Neither does a minor abnormality mean that the test was "failed".

Because of these kinds of misunderstanding of what visual field tests mean, it's especially important to get a copy of the results and the interpretation from the ophthalmologist.

[poeticsoul]

Yes, I know its not a 'pass/fail' test. I use that term because having Lupus and taking Plaquenil for almost a dozen years, its a test you don't want to turn out bad. It can mean blindness.

Whatever he garnered from the results, it was obviously enough to draw concern form my ophthalmologist, who is a highly regarded one in our area and who is the doc that saved my corneas-I have Corneal Erosion Syndrome from Sjogren's Syndrome, and my corneas we a MESS! Had punctal plugs put in to make more tears had my corneas 'scraped' and holes poked in them to heal over, several times (AGONIZING to heal from) and after so many attempts to help them, he did surgery on them.
Other eye docs said I'd never be able to wear contacts...I do now. They protect my corneas and the work on them he accomplished.

He was the one who said I had to see their retinal specialist right away to rule out the Plaquenil toxicity, so it was enough to make him move on it. Like I said, they told me it showed areas of depressions and blind spots in the right eye only-which is the eye giving me pain and problems now-not the corneal issues-they are fine now.

I plan on picking up a copy of the test results and doc's report on it to bring with me on Dec 2 to my neuro appt for the MRI results and EMG. I too, want to know now what it all means, since the retinas turned out fine. And like I said...at that time, I was just sooo relieved to NOT be going blind and having NO toxicity going on and to be able to get back to taking my Plaquenil...because it's what it keeping my Lupus in rmeission. I certainly don't need THAT firing up now too. :/