Hello everyone..

I am at such a loss and have been given the run around.
Im about to give up.

recent flare in beginning december-optic issues consisting of eyes jumping around, pain in eyes, inanimate objects moving, double vision, partial loss of sight, color differences.
Pretty obvious signs of ON.
Much worse than the very first time of ON back in '06.

& this time it was both eyes.
Was seen by my pcp who sent me to er.
Had 5 day IVSM followed w/ prednisone taper.

Most has improved.. Except the horrible pain in my left eye when i move it, double vision out of side view, depth perception is off by alot, sensitivity to light, and the headaches.

Been off of steroids for over a month..
Should this still be happening?
I am still unable to drive per all these issues..
Been trying to get medical help, but pcp wont sign the referral for whatever reason..
What worries me, is that this is how everything started off and within 2 weeks everything spiraled out of control.
Is this the new normal? The same flare? Or another flare thats preparing to take me out again?

Last night I had another episode in my sleep where I shoot straight out of the bed feeling like Im dying for 2-3 minutes, then burst into a hysterical laughter (even though nothing was funny and I was sitting there terrified) and that happened 3times last night, making me terrified to fall back asleep.

I just dont understand any of this right now, nor do I have any clue what I should be doing... Aside from wearing sunglasses in the house.. That does help dull a lil pain..

any advice for this situation would be greatly appreciated

Have you ever been seen by a Neurologist? I think I'd find another PCP if they won't give you a referral to a Neuro. That's just insane.

Who gave you the diagnosis of MS? Or do you not have that yet?

optic neuritis takes awhile to recover from. The steroids arent an instant fix. It takes awhile for the inflammation in the optic nerve to calm down, and if it was both eyes, the inflammation was probably pretty bad.

Five days of IVSM is a pretty good blast of steroids to throw at optic neuritis. (I've only ever had 3 days in a row of IVSM for optic neuritis)

AnyaDee,

I agree w Kitty. Can you see a Neurologist or an MS Specialist? In Milwaukee or Chicago? Wherever there is an MS Center? And/or a Neuro-opthamologist? If you must have a referral, take some one w you and let them help negotiate this w the PMD. It really sounds like you need this.

I can't tell you what is happening and what is normal and when/if it will end. Besides "everybody's MS is different," there just isn't any "normal."

If you saw a neurologist in the ER- maybe you could call that person and get some help.
I agree w you that help is needed.

As to the strangeness at night- I have heard from a friend of waking up feeling like she was going to die. Not the second part though. I see why you don't want to sleep.

My very best to you. I wish I could help more.
ANN

I don't have much advice as I have not had ON quite that bad. But, I can offer you lots of 's.

As for the sleep disturbances, I have heard of people, with or without MS, who have experienced that. It sounds horrifying and very scary and I don't blame you for not wanting to go back to sleep. This needs to be addressed with your physician. What medications do you take? Is it possible it is one of the medications?

I agree with the others that getting a second opinion would be a good idea, even with another PCP, one that will give you a referral.

Hang in there Anya! Let us know how you are doing.

Thank you all for responding

I was diagnosed in 09. And used to see a specialist but since I have no insurance it cost 120 dollars just to get in the door.. which I do not have at this time. So I have not seen my MS specialist Nuerologist since 2011.
My pcp was the one that ordered the mri in 09. Hes seen me at my worst. So it makes no sense that he wont send off the referral.

I told my pcp about these episodes in my sleep about 3 years ago.

I explained to him how these episodes only ever happrn when I flare.. Never seems to happen otherwise.
he believed it was sleep apnea and sent me for a sleep study which they then found out that I did NOT have sleep apnea.
Still no answer for what is happening.
I think the laughter thing might be PBA.. Dont see what else that could be as these episodes are FAR from funny.

Im going to try to get in somewhere tomorrow..

is damage being done to my eyes with all the inflammation that has remained? I cant even touch my left eye because the pain is that bad.

I found this as part of a NMSS brochure on vision. I was looking to see if ice would be helpful with the pain you are experiencing. It's a PDF file so I can't cut and paste the article. But here is a link to the NMSS search of ON. http://nationalmssociety.org/search-...start=0&num=20

And this is part of the brochure titled "Vision Problems - The Basic Facts"

"There is little information on the effectiveness of complementary therapies for vision problems, but some people report relief from vitamin B-12 shots during an optic neuritis episode. “We know optic nerve function depends on vitamin B-12 and folate,” said Dr. Thomas R. Hedges, III , professor of Ophthalmology and Neurology at Tufts University School of Medicine and
the director of Neuroophthalmology at the New England Medical Center. “I encourage people to take multivitamins."

I thought this was interesting and worth posting. Do you take vitamin B-12? A multivitamin?

Ayna, you have very good advise above and from me.

How long ago did you have the IVSM?

When I had optic neuritis the first time, I didnt do any steroids. It took me over a year before my vision was back to what I call normal. (meaning the color vision came back almost 100%. I could see and read normally)

The next time I had ON, I had double vision. Had the IVSM, vision went back to normal within a month. Never had any pain with that one.

Last time I had ON was last year. Started in februrary or march. At first it was pain just when I moved my eyes, but it wasnt horrible. That went on for about a month or a month and a half and the pain built up from there. It got to the point where I thought that digging my eye out with a spork would be less painful. My neuro gave me a Rx for pain (tramadol???) which did nothing.

By that time, my vision in the right eye was pretty much 100% screwed up. Couldnt see out of it and it hurt like crazy. Neuro had my regular doctor order me some IVSM, which was 3 days worth (that I can remember) and the pain went away fairly quickly after that. I had an oral taper after that.

It took awhile for my vision to start to clear up. I think it was early May, or even late May when it started to clear. (I kept hoping it would resolve by my birthday, which is in late May)

As far as I can tell, and from what my ophthalmologist said a couple of weeks ago at the 6 month follow up, my vision is back to normal. I want to say it was to the point I could drive by early June.

MS is one of those diseases that can teach patience. The lesson hasnt sunk in for me yet. I'm very very impatient. (I had another flare this summer that made my hands go numb....they're still numb and I'm out of patience for that)

you might just need to be a bit more patient for it to resolve. As for the eye pain, they can treat that. You might need to explain to them just how painful it is. They should be able to offer you a pain medication.

thank you soo much for that download tkirk!
So the diplopia and nystagmus are seperate from ON?
I thought this whole time it was just ON. But I have definitely experienced all of them..
I was taking b-12, d3, calcium, flaxseed oil, fish oil, and grape seed extract. Grape seed extract is amazing, I love it. And my mom just got me some b-6, but I havent taken any of those yet, havent heard much about it. There is a high possibility that I have b-12 deficiency as I cut out all red meat about 3 years ago.. Gorsh I would loooove to have a burger! Or steak!

Sallyc right back at ya!


I had IVSM from 12-10 - 12-14
Thenpill tapered for 2weeks. Finished pills end of december.

The diplopia and nystagmus are gone for the most part. Pain, double vision out of side view, and a partial blind spot in my right eye out of center view remain. And flashers.

Im waiting to hear back from the program im working with to help find me a neuro.. Said she might have an opthamologist for me to see until I can get a neuro. Said she had to call the opthamologist first to see if shed be willing to see me as she is a diabetic opthamologist... ON is ON regardless of the disease... Right?

By the way... You are all amazing!