Does anyone have information?

[madisyn]

Hi,
I have not been on the site in a while. I need to vent. ...I was diagnosed with Lupus and sjograns back in June of 2006. This was after a misdiagnosis of MS for over 10 years. I have alot of CNS symptoms. I have to give you a brief background so that you understand whats going on with my eyes. When I was diagnosed with MS I went to the ER with this horrible pain in my left eye, they said I had optic neropathy, also they said I had marcus gunn pupil. Along with other CNS involvment. Anyway.....I have been having really bad headaches for years.....they became worse in Jan of 2006...Migranes:worried: I always get them whith pain behind my eyes. In 2006 I also started having blurred vision. So they sent me to an eye specialist and he checked my pressure and it was elevated in only the left eye ..... now it's in both. So they told me I also have glaucoma.... But it's treatable ok so I started on eye drops now I'm on 3 types of eye drops to get the pressure down. I also had lasor surgury. Meanwhile my neurologist did a visual evoke potential on my eyes and it showed delays, they just did another test and the tech kept asking me if I was looking at the dot!!!!:eek: And then pulled the screen closer to my face after this she asked me if I can see out of that eye. My aunt has scleroderma she went blind in her 40's .... My rhemy says it is rare for lupus patients but he does have one other pt going through something simular... PLEASE if anyone knows anything ......I would appreciate it...I feel like a sitting duck!:sad: :sad:

[Zoi]

Hello!

I can relate to the sitting duck feeling of yours I think! :blush:

I also have CNS lupus and am at the moment going through recurrent optic neuritis (plural!). I'm a bit confused by your post though...

You say you get migraines with pain behind the eyes. Have they been linked to your optic neuritis or are they a different problem?

I had a visual evoked potential test in the summer after my first optic neuritis (I hadn't been diagnosed yet) and it showed delays in both eyes but my brain MRIs have always been clear... I'm supposed to go through one now but have been putting it off as I just don't think I can cope with finding out the extent to which my optic nerves are damaged yet...

Are you suffering from permanent loss of vision due to your eye problems? What treatment are you on for the neuritis and for your lupus?

Hope you get to the bottom of this soon,

Zoi

[madisyn]

Hi
Thanks for your reply. Yes it has all been linked my eye specialist thinks that the glaucoma is being complicated by the lupus. But as far as the headaches go I think they all feel is related to lupus and the eyes. As far as my vision goes I get blurry vision. I guess you could say it's hazy. What about you? how is your vision?
Thanks,
Madisyn

[Zoi]

Madisyn,

When you say blurry vision do you mean all the time or does it come and go?

My vision is not doing so well... I've had 2 optic neuritis episodes in my left eye (vision: 1/10) and 1 in my right eye (vision: 6/10) and they're all not responding to IV steroids or cytoxan (so far).

Never did have headaches from lupus but they don't sound too pleasant...

Zoi

[madisyn]

Zoi
My vision is hazy, blurred vision comes and goes. This is all so weird and scary all at the same time. Do you mind if I ask you what happened when you had your optic neuritis?
Madisyn

[Zoi]

Madisyn,

Could your blurry vision be linked to the headaches you're having? My aunt used to get horrible headaches and sometimes she'd get blurry vision with them that came and went as the headaches did...

Per the neuritis: What do you want to know exactly?

The first time I had it, I just woke up and realized I couldn't see much and there was this blinding pain behind my eye. I went to the doctor who run tests on every disease known to man (as I was also anemic), but was focused specifically on celiac disease or MS. Everything came back negative, except the ANA, and I was admitted for 5 days of IV steroids.

The neuritis responded immediately and within a week or two my vision was back to 10/10, I could see colours normally again (except red which I see as orangy) and the RAPD or Marcus Gun pupil returned to normal.

That was the first time though... The next episodes came on just as suddenly (one actually happened as I was shopping in Sainsbury's!!), only this time they were accompanied by a range of lupus symptoms~arthralgias, fever, fatigue, hair loss, mouth ulcers, blood in urine etc~ and they seem to be very stubborn indeed...

How about your optic neuritis? Did your vision returned to normal? How was it treated?

Zoi