Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

optic neuritis

rinkpa
rinkpa
Hi there, I came here about a year ago after my diagnosis of optic neuritis and was happy for all of the support and info I received here.
I went to a neuro-ophthalmologist and she thought all of my other symptoms, leg weakness, numb hands and bowel issues were all caused by the steroids that I took to help with my eye issues and she weaned me off of them faster than planned and lo and behold all symptoms did disappear. All tests so far are showing no MS. I am very happy for this but still worry that I may have it and maybe disadvantaged by not taking drugs to slow progress of disease. I would not want to take drugs while feeling good and no diagnosis just feel more afraid.

I am wondering if any one here has had optic neuritis and then nothing else? If after a year I have not had any symptoms that were bad enough to say this is MS and no lesions on MRI ( have had 2 so far) is it safe to say I don't have it? How long can I go symptom free and be sure it is not going to come back and clobber me? What else causes optic neuritis?
My vision in my right eye never cleared up totally but good enough that I can drive and function normally so I am happy for that

I appreciate any info that you can give me!!
StuckAtHome
StuckAtHome
I have had eye issues but I haven't had optic neuritis. The Mayo Clinic website has a good page that you might want to check out about possible causes of optic neuritis.

http://www.mayoclinic.com/health/optic-neuritis/DS00882/DSECTION=causes
lchoppel
lchoppel
Have you had a spinal tap? just because you don't have lesions in the MRI doesn't mean your spinal tap is "clean". Optic neuritis is common in MS, in fact, 80% of people with the disease experience some type of visual problem at one time or another. It's the first symptom for many.

I totally understand how you feel about taking a MS drug, wanting to take it to slow the progression, but not sure if you have it or not. I would seek a second opinion and think about a spinal tap before you say that you don't have MS. Just to be sure...
rinkpa
rinkpa
thank you, I did check it out and it has a lot of helpful info. I appreciate it!! : )
tjquiver
tjquiver
Rinkpa...I know EXACTLY how you feel. I have Fibro...but many MS symptoms as well. Although, they say that Fibro mimicks MS very well...it does NOT cause optic neuritis, nor progression! I lost my total center of vision in my left eye, 3 yrs ago...that lasted about 2-3 months. By the time I got into an ophthalmologist (we were moving & waiting for new insurance)...it was already clearing up. So...no Dx of optic neuritis either. Although, my optometrist thought I was getting glaucoma.

Does anyone know if they are able to tell if you've ever had ON...AFTER it's healed??

Ichoppel...I've requested a Spinal Tap for 4 years now...but still have not been granted one! I don't really understand why???
~tj
rinkpa
rinkpa
I did have a spinal tap and that also showed no MS. I don't know if they can diagnose ON after it is healed, mine is not totally healed so any eye doc. that looks into my eye so far has seen the damage.