The Lupus Forum banner

1 - 7 of 7 Posts

·
Registered
Joined
·
31 Posts
Discussion Starter #1
My optometrist last Sunday tells me my optic nerve looks pale and says I need a neuro-opthamologist, and is concerned about optic neuritis, when I walked into Lens Crafters for some new glasses.

Just what I wanted to hear! Awesome, I thought. I had tunnel vision, and difficulties four months ago, was evaluated by an optometrist, had VEP, and have had my brain and entire spinal cord scanned last Fall.

My neurologist saw me last Thursday-he couldn't see anything concerning about my optic nerve, and I haven't had symptoms like I did 4 months ago, with the exception of shooting pains down my spine and right leg (sciatica ruled out).

I have a bulging disc at T6-T7 causing the shooting pains.

But, back to my eye. I have a long history of migraines and they usually are on the right side of my head, same side as the side where my optometrist was concerned about my optic nerve. My neurologist doesn't think I need to go to the neuro-opthamologist until I loose vision in my right eye.

I guess I am interested to hear from anyone who may have had any similar experiences or if people have opinions. Do I push to see the neuro-opthamologist now, or do I sit and wait until I have a serious vision problem in my right eye? Either way, I feel like a time bomb and I won't lie, I am scared and a little depressed about the way my health is going.

Oh, and I still can use my right leg either. I am a gimp. And, no one can provide a proper explanation, for why my right leg does not work the way it should. It is worse whenever I am overheated.
 

·
Registered
Joined
·
1,999 Posts
Hi Kate,
You have the right info that you should be seeing a neuro-opthalmologist. There are only 3 in Seattle. I've seen Steve Hamilton, MD, and can highly recommend him. The closest you will get beyond the 3 we have, is to go to Stanford. A very limited speciality.

Many neuro docs are dealing with the illusion that they know it all. I commend the optometrist at Lenscrafters for figuring out where you need to go for the best care. Hopefully he was able to give you the phone # for you to call.

There is NO reason for you to wait until you lose vision. That suggestion would have me running away as fast as I could from that doctor. To suggest so borders on lunacy.
Sally
 

·
Registered
Joined
·
4,968 Posts
Hi Kate,

I have had MAJOR problems with my eyes that started in 2003. I have been to Optomitrists, Opthamologist and Neuro Opthamologists. I have had ever test under the sun done on my eyes,.....OCT scanning, Visual Field testing, pressure testing, etc.... you name it I have had it done.

My optic nerve is pale too and the optic disc is twisting or indented...whatever that means???:lol::lol::lol: I do not have Optic Neuritis, that has been ruled out.

I also get a lot of blurry vision and visual hallucinations that they seem to think is being caused by Migraines even though I do not have Migraine pain in my head when this happens....make sense. I have something else called Nystagmus where my eye balls jump from side to side yet I don't feel it happening. My husband will say, "Your eyes are moving again". Strange!!!

I have learned to live with my visual difficulties and just adjust my day based on my eyes. If I am having a good day I will drive my car, if not I stay home.

I sure hope the doctors can find a answer for you. No clear cut answers just cause more frustration for us. Keep us posted please and good luck.:wink2:
 

·
Registered
Joined
·
416 Posts
There is such a thing as Ocular Migraines which I learned about recently from my opthalmologist when I was discussing with her something the neurologist said. Ocular migraines are often painless, per the opthalmologist.

http://www.webmd.com/migraines-headaches/ocular-migraine-basics

Something to consider.

Barb
 

·
Registered
Joined
·
150 Posts
Hi Kate,

I am sorry to hear you're having these problems with your right eye.

I am here just to share with you my similar problem.

I have sle, apls and cvid (rare immune deficiency problem).

2 months ago I was told I had had (at some time in the past, the tests don't tell them, nor how many episodes I may have had - could be 1 or 100!) optic neuritis in my right eye.

I also have transverse myeltiis which is where my right leg does not work properly! I have recently been told I have Devic's Disease which the rare association of optic neuritis and transverse myeltitis and is associated with MS and Lupus.

My Lupus doc says though, that my lupus is very 'MS-like' and is causing me to 'demyelinate' my nerves - including the one behind my right eye = optic neuritis.

The medical opthalmologist I saw in the UK was great though. She said not to panic as it does not mean it is progressive, and indeed if you get on the right treatment for the inflammatory process of lupus it should keep it at bay! She said I had still at the moment, 90% of vision (only 10% nerve loss). She will only need to review me yearly.

So try not panic, but get it checked out and confirmed. Look at Devics Disease - see if you fit? Ask your Neuro about this? Do you have a Rheumy also as it is problably your lupus. Do you APS only I am told this demyleinating thingy is more likely in people who have lupus AND APS.

I hope you get on ok, do let us know,

I am thinking of you and I went through a similar 'shock' when I was told I had optic neuritis - it does 'fade' so hang in there!

Cathy x
 

·
Moderator
Joined
·
11,408 Posts
Hi Kate,

Wait till you lose vision in your eye before going to see a neuro-ophthalmologist?:eek: I am in shock that he said that to you.:wow:
I wonder if he would wait till he lost vision to do that.:mad:

I hope you find out answers soon. Please keep us posted.

Love,
Lyn
 

·
Registered
Joined
·
31 Posts
Discussion Starter #7
difficulty with my eyes today at work

Thanks for the replies...

I am going to call my neurologist tomorrow, and push to see the neuro-opthamologist soon.

At work today, my eye sight was having problems. I would see black spots occasionally when I was with patients. I don't want to wait for something crazy to happen.

If i have to play up my symptoms, I will, i don't care, and if they won't get me into the neuro-opthamologist, maybe I need to see another neurologist.

Something is clearly off with me neurologically, and it's not being clearly explained yet. It might just be ocular migraines. But, if it is something else, I don't want it to be missed.

I was reading about how low dose prednisone can cause a subclinical optic neuritis to re-occur, and I have been on prednisone now for months at 5 mg. I think this is why I need things checked out, because if I am on a medication that is messing with my optic nerve, I need to know about it.
 
1 - 7 of 7 Posts
Top