[journeygirl]

It's been a long time since I've logged on here. Mainly because I haven't had much activity in my journey to figure out what I have.

My Rheumy changed me from "mild" Lupus to Undifferentiated Connective Tissue Disease because I never got a 4th criteria but my ANA remains constant and high. My Complements 3 & 4 are always off but nothing else really shows up.

Last Mon I had double vision which I thought was weird but nothing horrible to run to the doc for. Oooopps! I did call and my vacationing primary told me to get my butt to Urgent Care. By this time the dbl vision was gone.

Referred to an Opthomologist who didn't expect to find anything unusual but he did. I have optic nerve damage in my left eye. Apparently unusual unless you've had a stroke or mini-strokes. I don't fit the mold for a stroke, just turned 50 this month, not obese, not diabetic, not on meds, no high blood pressure.

I had to get a full Lupus panel, and have scheduled a more intensive eye test. The nerve damage does not cause double vision, that's still a mystery. I am apparently blind in some small areas in my left eye.

Anyone else have optic involvement? I read the sticky w/ the Lupus and the Eye info and none of that is encouraging. At the moment I'm thinking this might be the kicker that puts me into an actual dx of SLE and I'm really paranoid about losing my sight or having something like MS.

Any responses would be appreciated.

 

[Zoi]

Hey there,

I'm sorry you're unwell at the moment...

Eye problems are always very very scary and I'm very sorry you have to go through something like that... :hugbetter:

I'm not exactly sure by what you mean by optic nerve damage... From what you write, I gather that the problem is little blind spots in your visual field that are caused by damage in the nerve itself? Was the eye doc able to say if the nerve damage was new or old?

I have central nervous involvement from both lupus and aps and have had very frequent eye problems. They can be very scary, but thinking about things like losing your sight certainly doesn't help (nor does reading about lupus and eye involvement, although I know how hard that is to not do!) Try and think of it this way; whether lupus or UCTD or MS it is incredibly unlikely that you will lose your sight especially now that your docs have actually found that there's something wrong and are doing tests to find out what's causing it!! There are a lot of meds someone with lupus or uctd or even ms can take that can help a great deal in situations like these, so do not despair!!!

Have you had a brain MRI? Are you under the care of a neurologist? Have you ever been tested for Hughes' syndrome (or aps, i.e. antiphospholipid syndrome)? APS is an autoimmune disorder that makes one's blood more prone to clot and sometimes people with lupus can also have aps. It can cause a wide range of symptoms from headaches, to miscarriages, to strokes, but is generally very treatable with blood thinners!

Hang in there...! :grouphug2: :grhug:

:foryou:

Zoi

 

[journeygirl]

Thanks for the reply Zoi.

The opthomologist did some kind of radial disk test that (I beleive) shows the thickness of the optic nerve and I've got a dead area in the nerve. So far, he's totally puzzled but concerned because of my UCTD. Thats why I'm getting the full panel done and he's ordered some eye test that he says will rule out some things but might open doors to other things.

I can't tell that I have a blind spot becasue evidently my right eye is compensating for it but I could tell when I had the radial test on the left eye. Some parts of the test field were gone or were filled in with what my right eye saw. It was very surreal.

No brain MRI yet, no neuro yet either. I need to call both my primary and Rheumy on Monday. Have not been checked for aps yet, but back in May I had surgery and my blood was not abnormally thick (but hey, with autoimmune diseases anything can happen right?!!!) I was tested 2 yrs ago for MS, but those were nerve tests in my arms.

It's good to hear there are meds out there that can maybe help keep my vision. It might be this is some kind of old injury and there won't be any futher degradation of the nerve but right now I just don't know so my mind goes there, ya know? LOL. I feel like I have an incredible amt of inflammation (lots and lots of tendon/lig problems) and really worry that the inflammation is now targeting my eye.

I guess I have to wait, see what my sed rate is, and all the other things. Maybe this time something will really show up so there is at least a direction for me to look into. That is the most frustratingly difficult part.

Thanks soooo much for letting me blab on, my family doesn't quite know what to say (or not say.)

 

[Zoi]

Hey Journeygirl,

It's good that the damage is such that your right eye can compensate for the blind spots you have in the other eye!! Calling your primary doc and your rheumy sounds like a very good idea! :thumbs:

APS needs specialized tests to be diagnosed (like lupus or uctd); a test commonly used is the anti-cardiolipin antibodies test or the lupus anti-coagulant (both blood tests!). Not sure what you mean about the MS arm tests; was it an electromyogram you had??

Even if the inflammation is now targeting your eye as you fear (and you truly don't know that that is the case yet! It may be something that happened years ago that will never bug you again!), do try to keep in mind optic nerve problems in lupus, uctd and ms (i.e. problems caused by inflammation) generally respond very very well to meds (especially steroids). But let's not get ahead of ourselves here!!

Best of luck with the docs on Monday! Do let us know how you get on!

:flowery:

Zoi

 

[journeygirl]

I a test commonly used is the anti-cardiolipin antibodies test or the lupus anti-coagulant (both blood tests!). Not sure what you mean about the MS arm tests; was it an electromyogram you had?? Zoi

The lupus anti-coagulant test was ordered when I got my full panel done last Thurs.

The MS test thing was given to me by a neuro a couple of years ago, I don't know the name of the test just that he stuck needles into my arm and there was an electrial current involved. The term that I seem to remember is nerve conduction test. At the time I had tingling sensations, shooting pains in my arms and hands and my arms didn't work right: weakness and I'd drop things for no apparent reason. Whatever it was I passed the test, I was found to have normal nerve reactions.

I suspect the eye problem has come in during the last year. Just because I've had floaters, trouble focusing, blurry vision, halos around lights, buring eyes and tearing for the last 6 or 8 months. And now one bout of double vision. All of those things (cept the dbl vision) I could easily explain away as age-related complications because I haven't had any uctd flares in about 3 yrs. But apparently, according to the Optho all of them & and damaged optic nerve coupled with connective tissue disease are not normal aging. He also said the 10 hour bout of double vision is most definitely not an eye thing but is likely something else which I am taking to be central nervous system related.

My sister has Myathesia Gravis. The plot thickens eh?

I really am trying hard not to self-dx, and not to get too paranoid & expect in the next couple of days I'll relax and just wait for the labs to come back and then on March 11 go to the next eye test thing and wait for that as well. :calm:

 

[greenhaggis]

HI,

The names they give to my eye conditions are:-

'Map dot fingerprint dystrophy' and 'Pigment dispersion syndrome'.

I suffer from dry eyes, pain and patches that come and go. The Map dot can apparently give similar pain that you get with optic nerve damage. I also get light sensitive and double vision plus headaches. I do have SLE as well.

It would be worth googling these conditions to see if they fit your problems.

Lesley

 

[mary520]

i found out last year that i have a lesion on my optic nerve in my left eye. actually the eye doc called it an enlarged blind spot and the rheumy call it a lesion. just went back for my yearly exam a week ago and it has gotten smaller, but its still there. i also have cns symptoms and several deep white matter lesions. i asked my eye doctor what the optic never lesion was caused by and he said it was caused by several systemic diseases and one was sle so mine was most likely from lupus.

hope this thing with your eye helps fit another piece of the puzzle together for you and you get the correct diagnosis.

Have a great day,
Mary

 

[journeygirl]

Mary and Lesley,
Thanks for commenting. I'm off to check symptoms and see what fits and what doesn't. I'm calming down (a little) about my eye issue and that I might be coming into a flare.

It helps that yesterday was the first day in 3 days that I didn't have a headache.

I have all my body parts crossed that I continue to calm down and not hold onto the stress of the unknown. Wish me luck!