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red246
03-12-2011, 01:35 PM
I finally went today to the eye doctor. I had been planning on going, but while I was driving today my periphial (sp?) vision in my right eye was all of a sudden pretty much gone. I have been having problems off and one w/losing partial vision/blurred vision/etc.. for a while, but today enough was enough. I was already out and had some free time so off to the eye doctor I went and thank goodness he had an opening!

My vision has gotten somewhat worse over the past year, but he said that nothing was "wrong" w/my eyes and that he thinks it is more neurological. It would make sense that since the only "organ" the Lupus seems to be affecting is my noggin! I didn't know that there could be "neurological" vision problems though, or was this just his nice way of saying "It's all in your head"? LOL

rob
03-12-2011, 01:55 PM
I have to deal with bouts of Optic Neuritis. It's inflammation of the optic nerve. I get sharp pain behind one eye, or sometimes both, and my eyes are very sensitive to pressure when this happens as well. My O.N. is attributed to my MS rather than my Lupus flares, but my neuro says that people with just Lupus can indeed have O.N. or other neurological related eye problems.

Rob

red246
03-12-2011, 03:05 PM
Rob,
Wouldn't this show up though during an eye exam? He did the whole ball of wax, dilating and such today. Of course by the time I had the exam my eyes were pretty much back to normal. When it does happen though and today was the worst, I almost feel like my eyeball (hah that sounds funny) is swollen. Thanks!

tgal
03-12-2011, 03:44 PM
I am not Rob and I may be incorrect but I know the eye exam only checks the actual eye and how it is working. It does not check the brain and how it sends/recieves information. I say this because when I had migraines as a child I would lose the vision in the side that was hurting. The eye doctor could find no reason for it but the neurologist did. He said their was inflammation leading to the eye so the eye just thought it couldn't see but it really was able to see it just wan't getting the images from the brain.

Did that make any sense?

Nonna
03-12-2011, 03:56 PM
I am not Rob and I may be incorrect but I know the eye exam only checks the actual eye and how it is working. It does not check the brain and how it sends/recieves information. I say this because when I had migraines as a child I would lose the vision in the side that was hurting. The eye doctor could find no reason for it but the neurologist did. He said their was inflammation leading to the eye so the eye just thought it couldn't see but it really was able to see it just wan't getting the images from the brain.

Did that make any sense?

So if i'm understanding this right, the eye is ok, but the inflammation makes the brain think that something is wrong with the vision. My neuro said my headache was due to an inflammation. So then maybe the unfocus vision - blurring - unclear sight is due to the inflammation.

i'm think you may have solved my vision problem also.

red246
03-12-2011, 04:19 PM
Mari - That would be weird if you were Rob & yourself! LOL

Makes sense, but I just thought that after they dilate your eyes and BLIND you w/ their light they would see if there was inflamation anywhere back there - but I'm probably wrong. LOL Definitely something to talk to the neuro about! Thank you!

rob
03-12-2011, 05:35 PM
Mari - That would be weird if you were Rob & yourself! LOL

Makes sense, but I just thought that after they dilate your eyes and BLIND you w/ their light they would see if there was inflamation anywhere back there - but I'm probably wrong. LOL Definitely something to talk to the neuro about! Thank you!

Well, in my case, a regular eye doctor had no part in the diagnosis. When I was first diagnosed with secondary progressive MS, I told my Neurologist that I had this pain behind my eyes and the pressure, and he sent me to the same opthamologist who was monitoring my eyes twice a year for retinal damage from plaquenil (which I've never had). He ordered an evoked potentials test for the optic nerve as well as an MRI of the specific area. It was in the end both my Opthamologist and Neurologist together who diagnosed the Optic Neuritis. I get an IV Methylpred infusion every 2-3 months to keep the O.N. and other issues with peripheral neuropathy in check.

Rob

tgal
03-12-2011, 05:46 PM
But Rob... you know all of this can be cured without medicine! (Just joking everyone! It is just something that irritates Rob when he hears it!)

LOL

debbie-b
03-12-2011, 05:48 PM
I finally went today to the eye doctor. I had been planning on going, but while I was driving today my periphial (sp?) vision in my right eye was all of a sudden pretty much gone. I have been having problems off and one w/losing partial vision/blurred vision/etc.. for a while, but today enough was enough. I was already out and had some free time so off to the eye doctor I went and thank goodness he had an opening!

My vision has gotten somewhat worse over the past year, but he said that nothing was "wrong" w/my eyes and that he thinks it is more neurological. It would make sense that since the only "organ" the Lupus seems to be affecting is my noggin! I didn't know that there could be "neurological" vision problems though, or was this just his nice way of saying "It's all in your head"? LOL

I pretty much have the same problem, my left eye is blurry and I can hardly see. My eye doctor two months ago said everything is ok, I had the works too, dialation and the bright lights. I am also very light sensitive, are you?
My eyesight has gotten worse in both eyes in just six months.

Debbie

rob
03-12-2011, 05:54 PM
But Rob... you know all of this can be cured without medicine! (Just joking everyone! It is just something that irritates Rob when he hears it!)

LOL

LOL! I have the real cure dammit! It's only $149.99 plus tax, title, and paperwork! Batteries not included. Do not pass go, do not collect 200 dollars. Void where prohibited. Caution-filling may be hot.

Angel Oliver
03-12-2011, 06:01 PM
No its not all in your head.Its scarey when it happens.Ive just be told last week im blind in my perifial vision in the right eye top right,a blind spot.I dont know why? They dont either.

tgal
03-12-2011, 06:37 PM
I am so sorry Amanda! I just hate this disease! I hate the fact that it does whatever it wants to do no matter what we do. I hate the fact that good, caring people have to be looked at like they are faking it. I hate Lupus. I hate AI Diseases. The only thing good that came out of my being sick is that I met all of you

Angel Oliver
03-12-2011, 08:18 PM
Ahhhh Mari i know i am so glad i met you and all the wonderful people here too. And yes AI diseases suck big time.They make you look like a fake n then you have a big fight on your hands,not with the disease (i know you do) but with the politics surrounding it.
Love n hugs
Amanda.xxxx

red246
03-13-2011, 05:17 AM
I'm extremely light sensitive!

I do hate this disease and POTS! I hate the fact that everyone thinks you're a hypochondriac because they don't understand! I hate the fact that just because "you don't look sick" they think you should be able to do everything normally. I hate the fact that some people don't even want to understand what we go through. When my sister was sick, I wanted to understand how she felt and if there had been a way I would have done it!

Okay, before I go off ranting even more, I better go wake the boys up & get ready for church! :) Hope everyone has a good day.

GoodDog
03-13-2011, 04:40 PM
Yep, it's bad enough being sick but on top of it to have to deal with doctors that are either dismissive or just plain mean and healthy people that can't possibly understand makes it a lonely journey. That's why I'm so grateful for this forum, we all understand and we don't have to do this alone. My greatest fear has always been being alone and now I'm older and here I am...alone. I sometimes wonder if I didn't bring it on myself because of it being my biggest fear. I don't want to burden my family and they don't want to hear it anyway, so it's the telephone calls when I'm feeling positive and that's it.

About 25 years ago I had a friend that developed MS. I was always pushing her to do things that she said she couldn't do. There was no way on Earth I could understand what she was going through. Not only was I unable to understand but I was unable to have compassion, for some reason (age?). She finally told me she couldn't be my friend any more because of it. To this day I haven't forgiven myself for not being able to understand and be there for her in the way she needed me. I really loved my friend and wish I could go back and do things differently. It does help me accept how people aren't able to understand what I'm going through.