Experience with Optic neuritis

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Experience with Optic neuritis

Postby kathryn6112 » Sat Dec 19, 2009 11:17 am

About 4 months ago I lost total vision in my left eye. After 6 doses of IV steroids and a few weeks, I regained about 5% of my vision, and have been at that level ever since. This morning I seemed to be totally blind in the left eye again, but it has improved slightly as the day progresses.

After this length of time, I am concerned that I will never regain useful function in my eye. My opthamologist and neurologist have no other suggestions for me. I did take a dose of Novantrone about 1 month ago at the suggestion of my neuro, but I have had several doses before and never felt like they helped.

To those with experience with ON, can you give me any suggestions? Has anyone had personal experience similar to mine and regained their sight at a later date? Thanks for your help!

Kathryn
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Postby ElMarino » Sat Dec 19, 2009 3:36 pm

Poor you. I'm sorry to hear about your trouble.

I was never as bad as you but I have recovered a great deal from where I was five years ago. I had lost sensitivity to light and the centre of my visual field was completely blurred.

Over three years I recovered functional vision. I still have blurriness but things are much better.

I'm sure someone else will know more precisely but I think trhat I'm right in saying that the optic nerve is more efficient than other nerves at regenerating.

I do hope that things improve for you.
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Postby sou » Sun Dec 20, 2009 12:39 am

I am sorry for your hard times. I have never had such bad ON, so I am not sure I can be of help. :-(

ON usually lasts about 3 months, but the rule is that there are no rules. The lesions associated with ON are usually tiny and are difficult to spot on MRI. Steroids have never helped me with ON. They relieved the symptom a little but that was temporary.

A friend of mine was blind for 6 months and then her vision started coming back gradually. I only hope that this will start happening for you, too.

sou

PS: Repairing blocked veins has been shown to rapidly resolve relapses. Could you be checked and have balloon angioplasty?
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Summer55 » Sun Dec 20, 2009 9:57 am

Hey Kathryn

Just over one year ago, I was diagnosed with ON in my left eye. I had almost 100% vision loss within a couple of days. They originally told me that my vision would be back to normal in a couple of months. But it wasn't. Then they said that it could take up to a year and whatever vision I had back after a year would be the extent of it. Now, they are learning that it will still continue to get better - with no time frame put on it.

Over a year later, I have almost fully regained my vision in my left eye. And it still seems to be getting better. I would always notice sudden improvements - rather than gradual. I would go months without any improvement and then, all of a sudden, I'd notice that my vision was just that much better.

I've been involved in a couple of research studies for optic neuritis which are being run my my Neuro-Opthamologist. She's making some really interesting discoveries which are very hopeful for ON and MS sufferers.

Have you had an OCT (ultrasound of the optic nerve)? Has your optic nerve thinned very much in the affected eye?

So, I think back to where I was at four months, and my vision has improved tenfold since then!!! Don't give up hope! People recover at different rates.
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Postby EyeDoc » Mon Dec 21, 2009 10:47 am

Inflammtion from ON causes damage to the optic nerve. It is variable per patient how much damage it causes. The common wisdom is that you will regain function of the nerve within one year. How much function is unknown, but keep up hope.

As with most things associated with MS, it is very difficult to accurately predict results.

As for myself, I have had ON in both eyes over a 3 year period and with the help of steroids I regained almost all of my vision back within a few months.
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Postby kathryn6112 » Mon Dec 21, 2009 2:31 pm

Thanks so much for all your responses! You have made me feel much better. I have not had an OCT but I will ask my opthamologist about it. The only thing he saw on the MRI was a very subtle inflammation of the optic nerve. There were no visible lesions near the eye or optic nerve, but I imagine there could have been a very small one.

I keep hoping I will wake up one morning and have a little more vision, but no luck so far. However, hearing all of your experiences makes me more hopeful. I wondered if it would come back gradually or in spurts. I will take either one! (LOL)

Thanks again and have a Merry Christmas!

Kathryn
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Postby Summer55 » Wed Dec 23, 2009 11:16 am

Hey Kathryn!

Glad our responses helped a bit!!!

I also just wanted to note that they are making leaps and bounds with research / treatment for ON patients who don't regain their vision on their own.

Check out these trials that are currently underway, some finishing up this year!

http://clinicaltrials.gov/ct2/show/NCT00395200

http://www.tevaclinicaltrials.com/Acute ... fault.aspx

http://lhon.ncl.ac.uk/lhon.php#two

And I know that my Neuro-Opthamolgist is currently doing a treatment trial with ON patients who don't regain their vision. I can't remember the name of the treatment. I believe that it involves stem cells. Currently it's only being tested on women though as one side effect is lactation. But from my understanding, people are regaining vision when they otherwise weren't. I think the abbreviation for the trial is ONTT, if you want to google it. (It's in Canada).

So, keep your ear to the ground and get yourself in any treatment trials, providing the risk of side effects is not too high. It must be a personal, educated decision.

Anyways..... wishing you a MERRY CHRISTMAS as well!!!!!

Please post any progress that you've made!!!!

Summer
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Postby kathryn6112 » Sat Dec 26, 2009 6:25 pm

Summer,

Thanks for the links. I checked them out and, unfortunately, the first and third are in the UK and the second one I don't qualify for (too old - LOL). However, that one is for Copaxone and I already take Copaxone anyway. The ONTT is about steroid treatments and I have had 6 IV treatments already that haven't seemed to help. I will definitely keep my eyes open for the results of the stem cell testing, that looks really interesting to me. I go back to see my neuro-opthamologist in a couple of weeks, so maybe he will have some new ideas.

Anyway, I will keep everyone updated. Thanks again and happy holidays!
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