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Discussion Starter #1
Good Morning everyone.

I hope you are all doing well.

I had a situation yesterday where once again I lost part of the vision in my right eye. I did not have any pain or warning. I blinked my eye and was half blind.

I lost the vision totally in 2005 and this is what started the diagnosis of MS. 3+ years later we know I don't have MS but instead MCTD.

I have been to a Neuro Opthamoloigst 2 times and really there is nothing major found to be wrong with the eye.

I have visual hallucinations and again yesterday total loss of vision. When I looked out of the eye, if you picture a clock, my vision was gone from the 8 to the 1 so almost half of my visual field went black.

It returned in about 10 minutes and has been fine since.

Any thoughts? Does this happen to you? I am frustrated and when this happens it leaves me baffled as they doctor never seems to validate why this happens.
 

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Hi Karol,

I'm afraid I know absolutely nothing about eye related problems but am sorry to hear that you've had this happen again. I can well understand why you find it both frustrating and pretty scary :(

Sorry I can't help :hug:

Katharine
 

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Karol,

It may not be your eye but your brain that's causing the problem. It could be due to cranial nerve involvement, described as relatively uncommon and usually transient in the literature regarding both SLE and MCTD. Oculomotor nerve palsies as well as other cranial neuropathies may be involved. Oculor migraines can cause visual hallucinations and transient loss of vision in one eye but I would think the Neuro Opthamologist would have considered this possibility. Another possibility is transient ischemic stroke. Both possibilities are difficult to diagnose because nothing may show up on MRIs or other tests.

Loss of vision is scary. I hope they figure it out soon.

Barb
 

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I forgot to mention that I have experienced visual hallucinations and transient loss of vision bilaterally and the possible causes I described above are the same possible causes of my vision loss per a neurologist and my opthamologist.

Barb
 

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Hey ((((((((((Karol))))))))) :hugbetter:

I'm sorry to hear about what happened... It sounds very scary indeed.... :(

If I remember correctly you've been diagnosed with aps too right? Are you on any blood thinners for it?

At some point a couple of years ago in between my almost regular optic neuritis episodes I experienced 6-7 very strange episodes of transient vision loss. There would be no pain, just like you describe, my vision would go completely from one eye (it felt like a black cloud of sorts was covering my visual field if that makes any sense) but just as I was starting to panic and thinking I should call my doctors or go to the hospital etc my vision would come back.

My neurologist evaluated me and thought I was suffering from complex focal seizures and my rheumatologist actually had the nerve to suggest it might be a psychogical defense mechanism to the possibility I was going to go blind from the recurrent neuritis and to be honest with you I liked the psychological explanation a lot more than the possibility of having focal seizures and I was under an incredible amount of stress at the time so I accepted it for a little while but these episodes kept happening and at odd times too when I was completely relaxed; in the middle of a bath, whilst watching a movie et cetera. So I called my opthamologist and my UK rheumatologist and they both nearly fell off their chairs when they heard what happened and what my docs suggested might be the cause.

They explained to me that what I was describing was in all likehood something called amaurosis fugax (which literally means transient darkening), that is a type of monocular transient vision loss. Amaurosis fugax can last a few seconds, a few minutes or a few hours and it has many causes from vasospasms to clots but basically all its causes breed a significant decrease or blockage of blood flow to either the retinal, ciliary or opthalmic arteries in the eye. To make a long story short my opthamologist called my rheumy and neuro and when he told them what his thinking was they immediately increased my heparin dose and these episodes never recured.

Visual hallucinations are incredibly common when one experiences major vision decreases, in fact there is even a special name for them; they're called Charles Bonnet hallucinations or Charles Bonnet Syndrome (CBS) and they can be complex and last for a little while but they are due to the vision loss alone and nothing else. What helped not go mad when I was experiencing them was thinking of them as the brain's way to try and some sense of a fragmented or incredibly blurry image. People with Charles Bonnet Syndrome can experience these hallucinations for several months but they nearly always go away in the end. :blush:

I don't really understand why your doctors haven't mentioned the possibility of amaurosis fugax to you, especially the neuro-opthamologist. If you haven't done so already, I think you definitely have to be seen by a doctor preferably before your vision is restored completely and if possible by an opthamologist. Even if amaurosis fugax isn't the cause of your vision troubles, a visit and evaluation by an opthamologist might give you more clues as to what is going on. Some tests, like visual evoked potentials for example are incredibly sensitive and can pick up abnormalities in the electrical conduction of the optic nerves even months after an episode of optic neuritis, but other tests are more time-sensitive and need to be performed during or soon after a problem has occured to yield useful results.

Here's a couple of sites with information on amaurosis fugax and sudden visual loss in case you want to read a little more about it:

http://www.nlm.nih.gov/medlineplus/ency/article/000784.htm

http://www.revoptom.com/handbook/SECT52a.HTM

http://emedicine.medscape.com/article/1216594-overview

I hope you get to the bottom of what's going on soon :)

Sending loads of hugs your way and keeping my fingers, toes and eyes crossed that a long, long, long time will pass before you have another episode like that again.... :rolleyes:

:flowery:

Zoi
 

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Hi Karol, i just wanted to come in an show you my suppport. i hope this resolves for you soon. hugs:)
 

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HI Karol, So sorry to hear of your problem. I have always said of our 5 senses, vision is to me the most important. It must be very frightening. I go see an Opto. this Tuesday. I suspect I am developing Sjourns. The past 3 months have been very challenging for me. I feel I am losing ground. Please take care and keep us posted. We care . Rosie
 

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Hi Karol,

Sorry this symptom has returned. I hope the cause gets straightened out.

My mother-in-law lost 1/2 vision in both eyes a few months ago. The CT scan didn't show anything but the MRI with contrast a few days later picked up a small stroke.

Take care,
Lazylegs
 

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Karol ((((HUGS)))),

Sorry that this problem with your eyesight has happened again, you go through far too much!

I can't offer any advice, but others seemed to have given you 'food for thought'..... again, something to mention again to your specialists!

Love
 

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Discussion Starter #10
Thank you all for your support here and Zoi for the links.

Yes, I do have APS and I take plavix but nothing stronger as I am a difficult case with the intestinal ulcers and they are afraid that if they put me on coumadin that I may bleed out internally.

Back in 2005 when I lost the vision in the right eye the mention of Amaurois faux was in fact given to what happened to me. Upon the MRI with dye and several lesions I was give the diagnosis of MS and pumped full of intervenous steriods.

I have had numerous tests done on my eyes including but not limited to OCT Scans, Visual Field Testing (which I fail), Evoked Potentials (which I also fail and is suggestive of lesions on my optic nerve pathway), retinal pressure testing, slit lamp testing, etc.... You name it and I have had it done. I go to Wills Eye Hospital in Philadelphia which is one of the best in the country.

My visual issues started back in July 2003 after falling on the job and hitting my head on the way down. Unfortunately my vision has never been the same and it is always my right eye. The hallucinations I get are in both eyes and the Opthamoloigst said these are from migraines. It literally appears that everything I look at is melting in front of my face. I can deal with this but total blindness in a eye or portion of a eye is just un-nerving to me.

I did put a phone call through to my Rheumy and the Neuro Opthamoloigst I treat with however it is Memorial Day weekend here and so all of the doctors are busy with family and BBQ's I am sure.

I truly appreciate the support here and folks who share with me their experiences. I know I am not alone, maybe scared but not alone.

I hope you all enjoy the weekend and thanks again.:wink2:
 

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WOW Zoi, incredible reading here. It does explain a few things I've seen in minor levels. Will not muck around with it and get seen if it recurs.

Karol, hope you are able to get the care you need asap!
Sally
 

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Hi Karol,
I wanted to send you some hugs and positive vibs your way.:goodvibes::hug:

Love,
Lyn
 

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Blind vision

Hi Carol
these are very interesting posts for someone like myself who had headaches and the worst was a stroke/aneurism operation many years ago, then seizure, and a second stroke (no speech)15 years ago. Firstly I was sent for eye specialists checks every year, then knew six years ago I had problems with my eyes, but certain doctors thought it was depression, that I refuted.

So I went to optometrist, and she said it was an epiretinal tear (an occlusion-clot), bent rods- (corners in sight) So she said the left eye had hemiariopia, residual from strokes. My right eye is perfect, so had eye angiogram, straight down south, with laser operation later.

A cararact operation didn't change the left eye, but eye sight is very distorted. While seeing several specialists for many symptoms, the eye is forgotten. After first stroke, no more headaches, but last twenty years can't stand glare, and now keep out of sun and darken the house.

I researched occular headaches and believe that is what I have, taking just Panadol. I have Sjogrens as well.

I particularly like your term 'visual hallucinations'. Kay Thackeray in her books also speaks of eye/speak problems, and does Triona Holden. Unfortunately no specialist here is ready to speak about APS/Lupus sight/speech problems.
All the best with your problem
Marymac
 

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Hey Karol,

You take plavix for your aps? Are your aps-related symptoms controlled with the plavix alone? If coumadin is problematic because of the ulcers I'm guessing low molecular weight heparin that you could self-inject would also be problematic for the same reasons?

It's excellent to hear that you go to a good eye hospital and that you're getting good medical care re your eyes! :)

Re the occular migraines you're experiencing: the image of the world melting in front of you, is it kind of like you're behind a waterfall and the world is infront of it (if that made any sense to you at all!)? A good friend has horrible occular migraines and he's always found the visual distortions that come with them incredibly frustrating...

By the way had you had visual evoked potentials done before the you got the intravenous pred the first time? If so, were they repeated after the iv pred? And did they improve at all? When you say you fail the VEPs do you mean the responses they're getting are delayed or?

I had severe delays in both eyes on my visual evoked potentials even before my right eye was obviously affected by optic neuritis. I also had a lot of trouble seeing the colour red for a long time, it looked like a washed out orange at best. The delays on the VEPs were characteristic of optic neuritis, i.e. delays in the P100 latency and my pupils reacted abnormally to light almost from the get-go.

I agree with you 100%; total blindness in one or both eyes is a scary prospect indeed.

Hopefully with the right treatment the situation won't even get close to that... :)

:foryou:

Zoi
 

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Karol,
It seems that you are another puzzle for those doctor do look at and ithch their heads only to have no ideas.

My thought is that it might be possible that it is related to the MCTD. But as you know I have no PHD in my resume. I think this as eyes are are muscle and tissue, so it goes to logic that it could also affect the eyes right. The other thing is maybe your eye did not like what it seen lol. I know it is no laughing matter but if we can't laugh about it then we cry so ... let's laugh.

I am so glad to hear that your vision has returned and you see the world again all of it. I hope that you are well and doing well otherwise.
 

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Discussion Starter #16
Thank you all again for your input here on my post.

Zoi, I was given IV Steriods both prior to and after Evoked Potential testing. My Neurologist seems baffled at the fact that I have never had optic neuritis yet my EP tests are always abnormal and the results are a mirror image of yours with the P100's being very delayed and abnormal pupil response.

My OCT scans have shown pale areas of the eye and another test I have had done where you look at a checker screen on a TV but stare at the dot in the middle of the screen while the screen blinks also comes back abnormal. I am pretty certain this is the test that tells them the message from my eyes to my brain does not transport correctly but it wouldnt if I have lesions on both of my optic nerves.

The waterfall description is brilliant and I thank you for that. It seems a more accurate description then things melting in front of my face.

Anyhoo, for now I am seeing ok again so fingers crossed it will just stay that way.:rolleyes::rolleyes::rolleyes:
 

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Hi Karol,

Just wanted to call in and give you my support. Please look after yourself and I hope things improve very quickly.

Sending gentle hugs and kisses
 

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Lots of huggles ((((Karol)))),

Hope your'e doing okay and give us a PM if you need to chat!

The time will fly with hubby away and he'll be back and annoying you before you know it! :eek: :rolleyes: :wink2: :lol:

Love
 

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Discussion Starter #19
greenhaggis;546977 said:
The time will fly with hubby away and he'll be back and annoying you before you know it!
He has been gone a little over 24 hours and has called me 4 times already.:lol::lol::lol::lol::lol:
 

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Hi Karol,

Just a wee post to say "hello" and to offer my support and good wishes as your friend.

I hope you feel much better soon. :)

Love,
Sandy
 
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