It's definitely optic neuritis.

[noodleskooze]

UPDATED!

Now I have an ultrasound and an MRI to see if things look like there's a likelihood of MS. I'm already at greater risk because my grandma has it.

Thanks for all the good thoughts so far. Keep 'em coming. I'm trying to stay positive, but it's not working very well.

Update:

I got a call! They still don't know the cause, but their preliminary reading of the MRI doesn't indicate MS (lesions) or tumors so that's good!

I have to do steroids next week then go in for more vision tests once the swelling is down/gone.

[Linie]

When will you have the results? I'll be thinking of you

[noodleskooze]

Oct 3, 2013 10:52:23 GMT -5 Linie said:

When will you have the results? I'll be thinking of you

Hopefully later today. My MRI is at 2:45.

[noodleskooze]

Oct 3, 2013 10:55:08 GMT -5 kooshball said:

Argh I'm so sorry. Optic neuritis really sucks. Feel free to PM me if you have any questions about treatment options or anything really.

They want me to go get intravenous steroids three times next week.

[AHappierHour]

((Hugs)) good luck later today

[feistypants]

Ask if there's a reason you can't get them at home. They should be able to give you a PICC and send a home health nurse.

[Captain Serious]

I can only imagine how scary it must be to hear all that. I wish you good scans and a MS-free future.

[noodleskooze]

Oct 3, 2013 11:04:10 GMT -5 kooshball said:

Oct 3, 2013 11:00:34 GMT -5 feistypants said:

Ask if there's a reason you can't get them at home. They should be able to give you a PICC and send a home health nurse.

The home nurse will just do a regular IV. They come out day one and you do the rest on your own. At least that is what they did for me. No PICC lines for the three day treatment. 

I'd have to give myself an IV?

Also, I was supposed to go back to work today (teacher), but I pushed it back to Monday. Should I be taking time off for the IVs or is it something I can do in the afternoon?

[noodleskooze]

I'm in no pain body wise, it's just when I move my left eye too far to the sides or up and down. It's actually much better today than it was the past few days.

So I can refuse the steroids, but then what? Just hope my eyesight returns to normal?

[Deleted]

Sending you lots of good thoughts!!! ((hugs))

[noodleskooze]

Oct 3, 2013 11:40:20 GMT -5 kooshball said:

Relapses last about 6 weeks and just slowly go away. You might have it happen again when you get hot but that happens with or without steroids. I went blind while exercising for a few month after.

So if I'm in minimal pain, the steroids probably aren't worth it, huh?

[feistypants]

Oct 3, 2013 11:04:10 GMT -5 kooshball said:

Oct 3, 2013 11:00:34 GMT -5 feistypants said:

Ask if there's a reason you can't get them at home. They should be able to give you a PICC and send a home health nurse.

The home nurse will just do a regular IV. They come out day one and you do the rest on your own. At least that is what they did for me. No PICC lines for the three day treatment. 

That makes total sense. I misread and was thinking steroids 3 times a week for a while.

[Deleted]

((hugs)) Positive thoughts coming your way.

[Gato]

Good luck today!

[polka]

Good luck with the MRI!

[mmsae]

I have optic neuritis, but not MS. For me it's an auto immune disease. I've done the IV steroids to help prevent scarring/ lasting damage in the eye.They are okay, but they will make you very bloated and retain water all over.

[Zoly]

I'm so sorry. I had a bout with optic neuritis about 2 1/2 years ago and did the three days of IV steroids. It wasn't bad with the exception of getting bruised up from the IV. I switched arms daily but obviously on day 3 I ran out if arms. :-)

I have never been diagnosed with MS and have just been labeled "at risk". I just gave birth about 3 weeks ago so I'm told if I will have a relapse it will likely be then which would be my second incident and official diagnosis (if that happens). I will be crossing my fingers for you.

[Zoly]

Oh and the IV did clear up my vision for the most part although it's never been 100%. But it also took three months for that diagnosis so it was already getting better at that point.

[snickers]

More good thoughts coming your way. Hugs.

[janiejones]

(((hugs)))

[noodleskooze]

The doctor is pretty adamant about me doing the round of steroids, even if I continue to improve. They want me to do it Monday-Wednesday of next week, but I'd prefer Wednesday-Friday since I have Thursday and Friday off. Will a delay of two days matter too much?

[vaportrail]

Are you going to be taking Solumedrol? Do you know what dose?
Just curious cause during my last MS relapse, they drowned me 1000 mL of Solumedrol and it was absolutely miserable.

[noodleskooze]

I haven't been diagnosed with MS yet, so I have no clue. They were almost two hours late getting my MRI started, so I probably won't have results until tomorrow now.

Some of you are using the word "relapse" a lot. Can you define it in this context? I always thought a relapse was another occurrence of a previous event. This has never happened to me before, and my only symptom is the left eye stuff, which is doing pretty well today.

[vaportrail]

Oct 3, 2013 17:58:06 GMT -5 noodleskooze said:

I haven't been diagnosed with MS yet, so I have no clue. They were almost two hours late getting my MRI started, so I probably won't have results until tomorrow now.

Some of you are using the word "relapse" a lot. Can you define it in this context? I always thought a relapse was another occurrence of a previous event. This has never happened to me before, and my only symptom is the left eye stuff, which is doing pretty well today.

I just use the term "relapse" to describe an exacerbation of symptoms.  For instance, I woke up on Labor Day last year, and I couldn't use my left arm or leg.  Not really paralyzed, just useless.  I had 3 days of steroids and was finally able to walk normally again at the end of October.  My 1st ever relapse was just full-body numbness, including my tongue.  MS has the absolutely weirdest symptoms.  I've had MS almost 8 years and those were my only two instances of major symptoms.

[noodleskooze]

Oct 3, 2013 19:10:06 GMT -5 kooshball said:

Standard three day steroid dose is 1000mg of Solumedrol. It's horrible.

I'm not sure which med, but they definitely want me to do 3 days of steroids next week.

[bonquiqui]

Oh noodleskooze, I am sorry.  ::hugs::  It sounded a lot like ON, but I was hoping it wasn't.  Let us know what they say about the MRI.  Are they going to do any other testing?

kooshball is right, the steroids are horrible.  It isn't the actual process that is hard, so I don't mean to scare you with that.  The IV is like any normal IV, and when I first had it done I thought "oh this is cake"  It is the feeling that it gives you after.  To me it feels like I am crawling out of my own skin.  It doesn't give me a super amount of energy like it does others.  It is almost like it gives my insides an incredible amount of energy, but I am still sleepy.  So I am dead tired, but my body doesn't want to stop moving.  I get the sweats, and just feel all around miserable.  

The last time I got IV steroids it was for 5 days, and it was because of optic neuritis.  My dr strongly recommended it, so I followed her advice.  I actually had to stop my taper early, because xrays showed it broke my back.  My back didn't hurt, but I went in to the dr because I had horrible bronchitis, and they did an xray to rule out pneumonia, and the results came back that I had a broken back.  They concluded it was the steroids, so I had to stop the taper right away.  Cold turkey which sucked, but I was glad to get off of them.  


Steroids are the really the only defense they know of to stop a flare up, because they don't know the answers to MS.  That being said it is not 100%.  My ON went away on it's own the first time, and the second time the steroids did stop the ON.  

That being said, I don't know what I would do if I had it again.  It is a very personal thing.  

I was never given the option to do it at home, but I know others have had that experience.  They pretty much set up a time at a hospital, and said " you will go tuesday-saturday"  and I did.  

A flare up i simply just when symptoms pop up.  It is an exacerbation, an attack, or a relapse.  You may go months or even years without symptoms, and then suddenly symptoms might pop up out of no where, and this is considered a flare up.  

[bonquiqui]

Oct 3, 2013 19:38:38 GMT -5 kooshball said:

Oct 3, 2013 19:30:45 GMT -5 noodleskooze said:

I'm not sure which med, but they definitely want me to do 3 days of steroids next week.

It's Solumedrol. www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/index.aspx

Prednisone is not recommended for ON.

Once you are over this, you will want to look at the treatment options. www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

Copaxone is the safest on the list in my opinion. It's not perfect but it's safe. I would start poking around and reading about the options so you have a plan after this relapse is over.

I agree with kooshball.  Copaxone is definitely the best and safest, and the best starting point.  In my experience with the ON and steroids was that the infusions were solumedrol, with a prednisone taper in pill form.  

[noodleskooze]

Oct 3, 2013 19:38:38 GMT -5 kooshball said:

Copaxone is the safest on the list in my opinion. It's not perfect but it's safe. I would start poking around and reading about the options so you have a plan after this relapse is over.

Is ON usually a reoccurring thing even if it's not MS related?

[noodleskooze]

Oct 3, 2013 20:36:36 GMT -5 kooshball said:

Oct 3, 2013 19:53:00 GMT -5 noodleskooze said:

Is ON usually a reoccurring thing even if it's not MS related?

MS isn't the only thing that causes ON but it's the most common. That is why the MRI is so important. 

Once diagnosed with MS, you can get ON again which is why eyesight problems are common with MS people. Having ON just once as put my optic nerve in a 'yellow' zone ie, thinner than normally and the doc can tell with his fancy optic nerve picture machine thingy. heh

It doesn't sound like MS is the diagnosis though (see update in OP), so now I'm still unsure of what I should do/know/etc. moving forward.

[bonquiqui]

Oct 3, 2013 20:52:57 GMT -5 noodleskooze said:

Oct 3, 2013 20:36:36 GMT -5 kooshball said:

MS isn't the only thing that causes ON but it's the most common. That is why the MRI is so important. 

Once diagnosed with MS, you can get ON again which is why eyesight problems are common with MS people. Having ON just once as put my optic nerve in a 'yellow' zone ie, thinner than normally and the doc can tell with his fancy optic nerve picture machine thingy. heh

It doesn't sound like MS is the diagnosis though (see update in OP), so now I'm still unsure of what I should do/know/etc. moving forward.

Well that is good, but it is possible to have MS, without lesions on the brain.  Did they do both brain and spine? What are they going to do next?  

I am sorry that you don't have any answers, but I hope you find something soon.