ON ... again

[cazlee]

Hello,

Some of you may remember me from 2009 where I was dX'd with optic neuritis, no known cause. Ultimate outcome was clean MRI, ON resolved itself with minor permanent damage, neuro-ophthalmologist had low concern of recurrence and said if no recurrence of ON and another clean MRI in a few years, I'm out of the woods for MS. I'm on the younger side, turn 25 in April, so I'm sure everyone involved in the treatment and diagnosis leaned on the optimistic side of it being the "willies" and hesitant to lean towards a more serious issue at the time. (which I feel was reasonable medical opinion, our bodies just do weird stuff sometimes)

Well .... It's back again. I noticed while composing an email, my left eye itched... "huh... that's not right, the text doesn't look right...." It's not severe - yet. But last time it took 4 days before I was completely blind in my right eye, and it took almost a month before I could really see again.

Fundamentally - I'm scared. It was extremely painful physically and financially last time. I'm reaching out for advice from those of you that have gone through repeat instances of ON, and anything that might help point the dr's in the right direction would be deeply appreciated. Thank you.

[Redwings]

If you want to possibly shorten the duration of another episode of ON, you should call your neuro-ophthalmologist first thing in the morning and go in and be evaluated for a course of steroids. The steroids won't affect the final outcome, but can shorten the length of the episode if you start them right away.

If you can't afford to have IV Solu-Medrol, you can take high-dose oral prednisone. It's not convenient (a full equivalent to the IV dose is about 25 pills a day for 3 days), but it's relatively inexpensive and just as effective as IV. The contraindication to orals steroids that still persists in the medical literature is referring to low-dose prednisone (only 60 mg per day), which was the customary treatment 20 years ago. Things have changed, so it's important not to be held back by obsolete information.

There's not really much to say about "pointing your doctors in the right direction." There's a pretty standard workup in the search for an underlying cause, which it sounds like you went through at the time of your first episode of ON. The workup involves another brain MRI and blood tests to evaluate for any possible cause of ON, plus a possible lumbar puncture and other tests. MS is a possibility, but there are others.

If you want to just ride it out and let things develop on their own, you can do nothing. But if you want to 1) try to shorten an episode of ON and 2) look again for the underlying cause, your best bet is to call your neuro-ophthalmologist first thing in the morning. The neuro-ophth can get the ball rolling from there.

[Mamabug]

I have not ever had optic neuritis, but, I take steroids for other MS flares. I used to take IV steroids, but, my veins are difficult to find, particularly if a second one needs to be found part way through the 5-day course that was always prescribed for me.

(I tend not to get out of a flare unless I take steroids. My initial 2 flares lasted 2-3 months each, with severe symptoms, because I was not yet dx, and did not take steroids. Now, my flares are usually done in 1-3 weeks.)

So, I started requesting oral prednisone instead. For me, it involved twenty 50mg pills (1000 mg prednisone) for 5 days, followed by a taper (2 weeks, or more, usually).

The first time the high dose of oral prednisone was rx-ed for me, my pharmacist called the doctor to be sure it was accurate. He'd never seen a rx for higher than 100 mg per day.

The pills taste horrible! They are very bitter. What works for me is to put 405 pills at a time in a tsp of yogurt (pudding or cottage cheese would probably also work). It masks the bitter flavor of the med and makes it bearable.

And, yes, it's much cheaper than IV steroids. But, can cause havoc on the stomach and trigger acid reflux symptoms in me, so, do whatever your doctor suggests to avoid that.

~ Faith

[cazlee]

Hi Redwings & Mamabug,

I have to go through the referral process (again) unfortunately. I kept my GP in the loop the last time around so they already have my records from the eye institute and the neuro-opth, I trust he will move quickly.

They did a pretty good work up last time, drew like 6 vials of blood, tested for all kinds of things. They didn't do a LP because the MRI was clean. They did alot more testing on my vision than anything, as it was returning. All of the blood stuff came back inconclusive or within normal limits IIRC. I didn't note what specific tests they ran or the results anywhere though. I know an ANA was part of it, along with other "system function" tests.

Thankfully I have better insurance this time around. I'm hoping my GP will go ahead and order the steroids while I'm waiting on getting in to the neuro's office, but I'm not sure if I'm expecting too much from my Dr. I'm really not looking forward to another MRI.

I ask for direction only because everything came back so ... bland last time. Not a thing for them to feel comfortable making a shot in the dark beyond "yep, it's optic neuritis, but we haven't a clue what caused it" - I'm not sure if there are "right questions" or "right tests", I really don't know much about what's out there. The neuro-opth was hesitant to discuss since there was nothing else clinical, and went to great strides to try to convince me it was just the willies.

[cazlee]

ah hah - I did post the bloodwork somewhere: ESR, ANA, RPR, anticardiolipin, IgG & IgM.

But like I mentioned, everything came back bland.

[Just a small town girl]

I hate to say it but I agree with Redwings, you need to call your neuro-opthamologist again. Since you're a return patient they can probably get you in pretty quick (my neuro-opth got me in less then 3 days after I called when I was having ON like symptoms after my initial episode). My neuro has basically told me to call the neuro-opth for any visual symptoms just because they have so much more experience with those symptoms.

I'm sorry that you didn't have the best experience last time, but I'd recommend calling them up and getting in quickly. My fear would be that you wait to get in to your neuro and then your neuro sends you off to the neuro-opth.

[Mamabug]

The first time I asked my GP (because he's more locally located than my neuro) for high-dose steroids, he rx-ed 100 mg per day (instead of 1000). Now, he knows what to do, and gives me what I ask for.

Good luck with the referral process (is that to find a neuro?). Maybe your GP or eye doctor could help you with that. ON is usually pretty well known by neuro-opths as something that could be caused by MS.

~ Faith

[cazlee]

Referral process again due to claiming under a different tier of insurance. Thankfully, my company screwed up and had me dual enrolled in both tiers of insurance they offer when I went thru ON last time. I screwed up and was claiming under the crappy insurance (they're both UHC plans ... how the heck was I to know the difference, the cards look the same until you need them!)

I kind of don't want to see the same neuro-opth but if I don't have much of a choice, I will. I know I can't be very picky when it comes to specialty doctors. I'll see if my GP can recommend anyone. I actually don't have a regular neuro because this neuro-opth chalked it up to the willies. I'm not here to dr. bash, but reading over my old posts reminded me of a lot. The neuro-opth wouldn't refer me to anyone else, his words, "Because you have the same risk as the general public for MS until you have a recurrence of ON, or lesions."

Thankfully ... it doesn't seem to be progressing at the same speed it did previously... but there's definitely something wrong with my field of vision in the right eye exactly the same way it started last time and the nerve hurts the same way.

[SNOOPY]

They didn't do a LP because the MRI was clean.

It is possible to have a clear MRI but a positive LP.

[cazlee]

It is possible to have a clear MRI but a positive LP.

I did argue that with the neuro-opth because it was brought up users here in 2009 to push for a LP, but he refused to order it.

[Justsayyes]

I have kept a link to this site about ON in my favorites, it has alot a good information, including a section on conversion to MS.

http://www.jandoerffel.de/on.htm

I hope that the possibility of a second incident of ON will get the docs attention and the care you need.

Just for your info, I have had ON twice. The first time without a diagnosis, no treatment. The second time was the other eye after diagnosis, and I had IV solumedrol treatment. Both eyes recovered to the same extent over time. I am lucky I know.

I have not had another incident of ON in 5 or 6 years. I sure was scared to have had ON in both eyes, and was preparing for a life with limited vision. Happily my vision is good, (knocking on my wooden head for good luck....)

[cazlee]

Justsayyes - Thank you so much for that link. I find it interesting how much of the information contained there and corroborated by other data I've been reviewing directly and profoundly contradicts the advice given to me by the neuro-opth I saw during round 1.

[salamandertom]

I second (or third or fourth - I didn't read further) the idea of immediately getting on IV solumedrol. I had ON in November - with another bout this month. My eye didnt go completely blind, but didn't get almost better either. It is significantly worse for the wear, and lasted a very long time - only to happen again a short time later and I had steroids in December for the ON. I didn't get them until about 10 days after it started though. If you start yours right away, the earlier the better is what the studies show! I wish you very good luck, and honestly - I don't think *I* would settle for a pat on the head to be sent away this time without much further investigation into MS even with another clean MRI. HUGS and good luck.

[salamandertom]

I just read through all the replies, and came up with a question - did you have a VEP to go with your ON diagnosis last time? Perhaps you could ask for one this time? That seemed to be very helpful for me. I would see if you can get a referal to a neuro for this ON and not the same neuro opth. That is just my opinion, I think neuros are more appropriate for MS stuff. I know neuro opths are good for ON, but this is your second case of ON, and the possibility of MS should be explored further than a clean MRI. good luck

[cazlee]

Hi Salamandertom, first, thank you for your replies and kind words

I don't remember electrodes so I'd say the neuro-opth did not do a VEP. He did do quite alot of other measurements. Since there is known, otherwise measurable nerve damage, is there further point to the VEP?

I have minor permanent loss of color saturation, particularly red, and peripheral acuity loss detectable on that light blip click-a-button test - mostly in the upper right quadrant. The nerve head was still pale at my last glasses rX check 6 months ago or so. One thing they did prove on the MRI was inflammation of the nerve itself. The nerve pain never fully resolved itself either. I completed follow ups with the neuro-opth but never went back about the nerve pain. Didn't really want to put out a copay for more reassurance of how unlikely it is anything other than the willies. *sigh*