Questions about Optic Neuritis and L'Hermittes

[escape goat]

Hi all, two questions...

Firstly, I started having Optic Neuritis about 4 weeks ago. It started with pain w/ movement, then about a week later, I began to have blurred vision and colors started seeming funny. Went to dr, opthamologist, and my neuro and all said ON.

About 2.5 weeks after the ON started, the pain with eye movement went away. However, the vision definitely hasn't gotten better, and at times seems quite a bit worse. I now have pain from time to time without moving the eye, just hurts behind the eye.

Since the pain part went away mostly, does this mean my vision is done improving (it hasn't improved at all, really)? And how long does ON usually last?

The other question I have is about L'hermittes... Within the last couple of weeks, I've begun to have a funny sensation when I bend my head foward, but it's not radiating down from my neck, it's in my L-Spine/tailbone. Feels like a long shudder, vibration or something.. maybe like a super mild electrical shock ... And sometimes the muscles around that area will twitch in response.

Is this L'hermittes? Sounds different than what I hear described usually... I don't have any sensation in my neck or down my arms. Just in my tailbone/low back area.

[Erin]

I dont know if what you described was L'hermittes. I only had L'hermittes for a few months, and mine made my fingers tingle when I would bend my head forwards.

I can tell you that Optic Neuritis takes awhile to heal. Some people start to recover from it fairly quickly. It took me a loooooooong time to start recovering. (at least from my point of view)

My first ON (in the left eye) started in August of 2006. The pain quit after a few months. It was was the worst during the first two weeks, but was slowly getting better and after a few months, the pain went away.

The vision stuff took a lot longer. My color vision was wonky for most of a year. The color vision started to come back in May of 2007. I had a round of steroids in June or July of 2007 for some really bad vertigo, and my vision seemed to have an improvement in August or September of 2007.

I would say it took me about a year to a year and a half for my eye to get the vision back to close to what it was before the attack.

I developed ON again in my other eye in February of this year. I didnt have vision disruption with it until April or May of this year. It was at it's worst in mid to late May, and I also had vertigo with it for about a week or two towards the end of May.

My vision started to slowly improve a couple of weeks ago, and it's a lot better than it was at the end of May.

I'm happy that my vision is improving in the currently affected eye, and I'm ecstatic that I got as much vision back in the eye that was first affected. I never expected to get it back at all, so I'm thrilled with the improvement that I've had. I'm a crocheter and a knitter, and I love doing color work and experimenting with different color combinations. I was so depressed about my vision when the color vision had gone all fubar. I'll take any improvement my eyes get.

I've heard from some other people with ON, that some of them had vision improvements in weeks, a few others within a year, and one person said that after a decade of having almost no useful vision in one eye, he recovered about 75% of his vision suddenly over the course of a few weeks. I think most of the people I've talked to who had ON had improvement within a year.

I've talked to a few people on another forum that have never had any improvement. I think it just depends on the person and the evil-ness of the MS Trolls that are screwing around with their optic nerves for how much improvement they get.

My opthalmologist and my neuro had both warned me that I'd probably never have any improvement. So, the fact that my vision came back as well as it did, proved to me that it's possible for the nerves to heal.

When I first got ON, I was told it would probably be about 3 weeks for improvement...then I was told 6 weeks. Then I was told it could be 6 months to a year for improvement OR that I'd never have improvement. I think most doctors are guessing when it comes to estimates for improvement.

I hope your eye(s) start to improve soon, and that you get 100% improvement. ON really really sucks.

[Nancy T]

Yes, that is Lhermitte's. The tailbone was the first place I got it--just a vague "numbish" sensation there when I'd bend my head down.

Since then I've had Lhermitte's in MANY places in my rear (anywhere below the waist), legs, hands, and wrists. It's usually either an electric buzz or else a "tense/pulling" sensation, but occasionally it's an actual vibration of the muscle or else some hard-to-describe sensation like you mention.

Many other people have had Lhermitte's in different places, too--it does NOT have to be the classic shock down the spine.

I had no idea what these weird sensations were until I told the neurologist about it and he said "That's MS."

Of course he later said I didn't have MS and I was never diagnosed. Still, there is no question that I have Lhermitte's.

Nancy T.