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-   -   tell me about your optic neuritis (https://www.neurotalk.org/multiple-sclerosis/194753-tell-optic-neuritis.html)

karilann 09-27-2013 10:52 AM

tell me about your optic neuritis
 
This morning it was beautiful here in northern Michigan so I decided to wash some windows. Up and down and over the head arm movements are tough on most people and I take my time.

By the time I got the the south west side of the house, it was getting pretty warm. I started feeling a little weak....but kept going. As I was getting pretty warm, my eye sight seemed to fade in the center of my vision. Like I had lost contrast and color.....a white veil down the center of my vision.

I went in the house to cool off and it went away in less than 10 minutes. Could this be optic neuritis? It has happened to me before when I get hot and over exert myself.

Kitty 09-27-2013 11:16 AM

I've had ON twice and each time it began with pain. Pain whenever I moved my eye from side to side or up and down. I also had vision distortion but always had the pain, too. I'm thinking your situation was just overheating.

SallyC 09-27-2013 11:34 AM

I agree with Kelly, Karilann. The heat will do that to me every time..:eek:

ANNagain 09-27-2013 12:21 PM

It sounds exactly like Uhthoff's phenomena, Karilann.

http://mssociety.ca/en/information/s...ng_uhthoff.htm

All should return to baseline.

(My ON also started w severe pain on moving my eye.)
ANN

Blessings2You 09-27-2013 02:34 PM

Quote:

Originally Posted by ANNagain (Post 1017957)
It sounds exactly like Uhthoff's phenomena, Karilann.

http://mssociety.ca/en/information/s...ng_uhthoff.htm

All should return to baseline.

(My ON also started w severe pain on moving my eye.)
ANN

I agree. I had that symptom sporadically back while I was trying to get diagnosed. The first time, I thought I was getting a migraine or maybe an ocular migraine.

Then I read about people with MS having ON and losing their sight, and it scared the tar out of me. However, my ophthalmologist said my optic nerve looked perfectly healthy, and it still does.

I don't get it very often anymore, and that's probably because I try not to get overheated or overexert myself.

Even though I now know what it was/is (in my case), it's still an unsettling feeling.

Erika 09-27-2013 03:09 PM

The first time I had pain on eye movement and then over the course of 2 or 3days, lost the color, brightness and then the vision completely. It came back within a month or so. Subsequent bouts of it were simialr to the first but I never lost the vision completely.

It has left very large blind spots in the center and upper areas of the visual field and the above symptoms of ON come back if I get overheated, over tired or ill.

Have you had ON before this? If so, maybe the combination of heat and fatigue obstructed the symptoms from being compensated for. That's what seems to happen in my case.

With love, Erika

Sparky10 09-28-2013 11:28 AM

Your symptom does indeed sound like Uhthoff's, Karilann. I've had that, and ON. Very different symptoms (for me). Uhthoff's used to affect me in the southern heat, when I lived in Mississippi and Louisiana. For me, if was like a cloud had covered the sun on a clear sunny day. Went away after I cooled off.

My ON took away vision from the line of sight down. Everything below what I was looking at was gone. Very specific, too. I could only see the top half of words I read. That happened twice, long before I sought a diagnosis. Lasted several weeks, if I remember correctly.

AynaDee 09-28-2013 12:24 PM

My very first symptom before I knew I had MS was a white fog over everything in my right eye, the middle was the worst. I remember looking at my college professor, covered my left eye and boom he disappeared. I could *kinda* see the things that were on his sides, but he *the middle vision part* was just a big white fog.

Second bout of ON was an immense amount of pain behind the right eye.

3 bout was last December.
-pain
-double/triple vision
-objects wiggling and moving
Mostly in the left eye that time.

If I get too hot, I get the fog back in the right eye.

If I haven't got enough rest, tired, stressed I get double vision.

Sunlight=MASSIVE pain in my eyes, which then leads to massive pain in my head.

I am super fortunate enough to have my eyesight recover decently after my bouts. I have damage to my left eye from the last bout but at least it has recovered some :)

I'd stay far away from heat and long exposures to direct sunlight.

Maybe do the West side of the house in the morning and East side in the evening :cool:

I'm glad to hear it calmed down after cooling off :hug:

jnewk 10-05-2013 02:04 PM

optic neuritis more questions ....
 
Hi karilann

I seem to be having your exact symptoms right now....except not heat related....I'm starting to get a little worried. I don't see out of my left eye (started with sever amblyopia when I was born) but have had ON in left eye and lost a big chunk of what little vision I had in left eye. But now, my "good" eye...my right eye....has the same kindof symptoms you described. Because I never had good vision in my left eye to begin with, I don't really know how the ON started in left eye. In fact, my opthamologist is the one who told me I had it. I didn't even know. But now I'm very worried about this in my right eye. I had a thorough eye exam about 6 months ago and aside from "old eyes" they were ok. Any thoughts? experience? suggestions? I will call neuro on Monday but I'm very nervous here on a Saturday morning.

I hope that your episode has subsided and you are feeling as well as possible. Has it improved?

Thanks for listening and letting me jump on your thread!
janet

Erika 10-05-2013 06:04 PM

Hello jnewk,

If the symptoms have come on suddenly and there is pain with it, you might consider going to the ER. Tell them that you have a history of ON because they might want to start you on steroids to control the inflammation. The sooner that you do that if it is needed, the better the outcome.

Please keep us posted.

With love, Erika

SallyC 10-05-2013 08:58 PM

Janet, along with your symptom in the other tread, could you be in
a flare? Sure sounds like it. Get thee to the ER or Doc's ASAP.

Mariel 10-06-2013 10:29 AM

I had ON for 8 years and then suddenly it corrected completely. It started, as many describe here, with pain, especially on moving the eye, and double vision. I looked out the window and everything was double. Then I developed a blind spot in the middle of my eye, just as others here. The blind spot would worsen and get somewhat better over the course of eight years. I could not watch TV without Pain, and wore a patch when out in bright light. It started on a day which was hot and sunny, with me out in the sun (never do that any more without covering up).
That was on Maui that it started, and the doctor there said there was nothing wrong with my eye even though I had double vision and a blind spot. I cried in his office, because it had been decades of symptoms without a diagnosis. I still don't know why he could not see what I had.
Back in Seattle I saw a doctor who could see something wrong but was not sure it was ON. He sent me to a neuro-opthalmologist for MS people, who said that taking steroids was not his usual protocol, because research showed that steroids did not hasten healing.
So I lived with it. I developed a drooping eyelid, very bad, but this went away too when I recovered.
I will never understand why it is hard for doctors to see these things which obviously exist, and which they can even take pictures of (the drooping lid). He took a pic of my face AFTER the lid droop went away and it was dramatic to see the difference. This was one of my experiences of doctors not being able to fully diagnose my situation.

I don't know if lid droop is ever a part of others' experience. It was not thought to be a stroke. I did have a number of lesions on my brain on MRI when that finally happened, when I was over fifty and had had symptoms since 17. My astrology said I could not easily be diagnosed in Seattle. I gave up astrology some time ago, as a pagan affect, but it was right about diagnosis for me. My life has been confusing, and that's one reason I find it interesting to read on this forum, to see that others, too, have had doctors who could not pinpoint their problems.

Later I was dxd with porphyria but I think I have a type of porphyria which sometimes develops MS signs and symptoms. Even later than this, some neuros said I had MS and some said I have porphyria. I think I have both, and tests ARE positive for porphyria. So I do the Swank diet and I avoid the Porphyria triggers and live with "both" and never go to neurologists now. And what that has to do with the "ON" I had for 8 years I'll never know.

Erika 10-06-2013 12:58 PM

"He sent me to a neuro-opthalmologist for MS people, who said that taking steroids was not his usual protocol, because research showed that steroids did not hasten healing."

That's interesting Mariel. Although I am under the impression that it helps to stop it from progressing if administered in the first few days.

With love, Erika

Mariel 10-09-2013 02:39 AM

I'm not saying the neuro opthalmologist was correct, Erika. That was just what he thought from having read material on studies of the use of steroids for ON. I would not have been able to take the steroids which I've read are used for ON, such as Prednisone or that other one by IV, because I have Porphyria. But we didn't know I had it then. I could have taken Cortisone, which is OK for Porphyria, but I don't know if that's used for ON. I have had cortisone several times to alleviate various pains, and always with success, but not for the ON, which was gone before I used the cortisone.


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