No dx yet but ON questions

[bs957]

not dx'd w/ ms but been thru 2 bouts of ON. Had MRIs but no active lesions noted. Blood tests/LP all show normal ranges. Neuro doc doesnt think ms but is sending me to neuro-opth. first bout of ON 6 yrs ago took out quadrant of left eye but is now mostly recovered. latest bout of ON late May this yr) brought right eye from 20/20 down to 20/400 but has gotten better to 20/200.
have been looking for active ON type forum but havent found any with recent postings. anyone with similar experiences or can put me in the right direction?

[newbie but goodie]

Definitely see a neuro-opth or an MS specialist. I think they can start a disease management med with multiple CIS (clinically isolated symptoms) even without lesions or pos LP but I could be wrong (it wouldnt be the first time!). If it were to end up being MS, the best chance of minimizing permanent eye damage is to reduce the damaging flares.

I had a bout of ON in Sept 2011 that left me 100% blind in one eye. With meds and time I have regained most of my vision but it is still blurry and lacking in red saturation and brightness. I can see just fine with one eye like this- not sure how I would fare with both eyes affected.

Just out of curiosity- how do they treat the ON for you? Mega-dose steroids?

[22cyclist]

not dx'd w/ ms but been thru 2 bouts of ON. Had MRIs but no active lesions noted. Blood tests/LP all show normal ranges. Neuro doc doesnt think ms but is sending me to neuro-opth. first bout of ON 6 yrs ago took out quadrant of left eye but is now mostly recovered. latest bout of ON late May this yr) brought right eye from 20/20 down to 20/400 but has gotten better to 20/200.
have been looking for active ON type forum but havent found any with recent postings. anyone with similar experiences or can put me in the right direction?

There are a couple of other diseases close to MS that cause ON. NMO/Devics disease is one of them. Your Nero-ophtalmologist will be able to sort out what is going on as far as if it is related to MS/NMO or just ON alone.

ON is treated with high dose IV steroids to lessen the effects on the eye if it is thought to be caused by MS or NMO.

Keep us posted and let us know how your appointment goes.

Sometimes ON lesions are hard to detect on MRI by the way. It may be time for a new MRI.

Good luck!
Feel better soon!
Lisa

[bs957]

@ newbie: my first episode 6 yrs ago I was given a course of oral prednisone for treatment. my 2nd started out with oral prednisone also. the neurologist I saw this time around suggested a 3-day course of the high dose (IV) followed by a tapered dose of oral prednisone, but that didnt happen until 3 months after the episode happenned. That finally got rid of most of my headache over the right eye. Vision has improved some but not as fast as I want it to. I think next time I will ask for the IV first and my neuro doc has agreed.

I had been between primary docs as my original doc's office didnt take my issue seriously.
Went to my eye doctor (who got me in right away) and was at 20/200. He referred me to an opthomologist and got the appt early the next morning. Vision was at 20/400.
Opthomologist referred me to the neurologist but that appt didnt happen until 2 months later (soonest appt) so I was sent to an urgent care center who prescribed the oral prednisone.

@ 22cyclist: had brain mri (w & w/o) just after episode happenned and c-spine (w & w/o) this last august. Had LP and also high dose IV steroids in sept.

Checked for NMO, lupis, west nile, lyme's, b-12 levels, etc
but all came back no issues/normal. No numbness or other symptoms of MS that I have read about.

First avail appt with neuro-opth doc not until end of december. Did I mention I hate waiting?
hopefully he can figure out what is going on.

[newbie but goodie]

Yikes- sounds like youve been through the wringer! I do not hope you have MS but do hope you get an answer soon! Even with a disease as unpredictable and wacky as MS, I was relieved to finally be able to put a name to my symptoms. Either way, this sounds autoimmune. Maybe there is a drug that could serve as a catch-all until a definite answer is revealed? Long shot, I know but we can dream, right?