Recurrent ON?

[zoefromsussex]

Hi, I was just wondering whether any of you with a dx of MS have had more than one bout of ON? My first bout started in the right eye in Oct and is partially recovered but now I've got it in my left eye and my neuro is unsure whether it's due to one single episode (as the optic nerves are obviously in the same brain region) or two separate eipsodes. He says he would expect a future episode to affect a different region and that further ON would make him question whether I've been given the right diagnosid of RRMS. Any thoughts on this please?
Thanks, Zoe

[jensequitur]

That's a good point, DV - I hadn't thought about it, but you're right.  I have monocular double vision, which I haven't gotten a straight answer on.  (Is it astigmatism?  Is it neurological?)  

But I definitely have optic nerve damage, which has only partly resolved.  I don't get the color change any more, but things in my right eye are definitely smaller than the things in my left.  And I feel 'weird' when I look out of my right eye.  Disoriented and out of sorts.

So all that is to say that optic nerve damage definitely takes a while, and you may not fully heal up from it.

[anon07072023]

Mine isn't new symptoms coming on quickly, mine is a slow progression. I look back and things have changed over time. Things are more progressed now then when my symptoms first started 3yrs ago.  And looking back a year ago from today, my symptoms have progressed from what they were just a year ago.  My initial symptoms were spasticity/tightness in my legs and I had a lesion(s) on my spine and a few in my brain. Then 3 months later was my first bout of ON.

Like Bob & DB mentioned about Devic's/NMO, they initially wondered if I had Devic's/NMO and have tested me twice for it. I think I remember reading that the test is only 70% accurate or something like that.  
    

[doublevision1]

Diplopia is double vision

Devic's can cause problems with the extremeties due to spinal lesions, but not necessarily; or, not at first but may develop over time.

[zoefromsussex]

I know it can take around 12 months or longer to completely recover from ON so I'm not concerned about the first eye, I was just surprised to get it in the other eye so quickly after. So although both eyes are affected, they're both at different stages if you get me? I had no pain whatsoever with the first eye but lots before the vison loss in the left eye.
What is diplopia then? I haven't heard of it. I have heard of Devics but thought that would also cause problems with the legs?
My lesions are only in the corpus callosum (think that's how it was spelt) as far as I know

[doublevision1]

jen -  i don't think I knew that ON can cause diplopia.

I had severe eye pain and foggy vision in the affected eye when I had ON, but no diplopia.  

My diplopia and nystagmus  (binocular, horizontal, left lateral) was due to a lesion on my brain stem (6th cranial nerve) .

[jensequitur]

As DV has said, 4 months isn't enough time to recover from optic nerve damage.  Mine took two years to heal, so it'll take a while.  (Heck, it hasn't completely healed, as I still have double vision in my right eye, and more blurriness.)

[doublevision1]

I was thinking the same thing as Bob re Devic's.  I seem to recall reading that more often than MS, Devic's can affect both eyes at the same time.  Doesn't mean this doesn't also happen in MS, just not typically.  There is a blood test, NMO IgG, that can be run, bearing in mind it does have a high rate of false neg results which makes ruling it out somewhat challenging.

If MS, it is possible that this can be either part of the same attack or a new attack. i wonder if a new MRI of your optic nerves would be helpful; if only the newly affected eye lights up with gad, would this mean it's a new and distinct attack?  I have no idea so am just throwing that out there.

4 months is not out of the ordinary to not have recovered from the first bout.  As Lulu says, not everyone fully recovers visual accuity completely, ever.  I did recover very quickly from my ON, with no discernible residual damage.  On the other hand, I recovered from diplopia very slowly, it took a year or so, and I didn't recover 100% - probably more like 90%.

[COBOB]

Recurrent ON happens, but they need to rule out NMO (Neuromyelitis optica also known as Devic's disease or Devic's syndrome,)  

I have two rounds of ON.

Bob

[zoefromsussex]

Sounds like I've been pretty lucky (not sure that's the right word! lol) to have been diagnosed so quickly. In the space of 4 months I've had ON in both eyes and been diagnosed! I think I was very fortunate to be sent to the right doctor's when the ON started. So, you mentioned that sometimes you wonder if you might be more likely to have PPMS...have you noticed new stuff quite quickly or has it been a slow progression? My neuro tells me he feels the odds are pretty good for me because of presenting with eye issues, my age (I was 34 in Dec) and my sex but of course nobody can predict with certainty.

[anon07072023]

No, my dx of RRMS didn't come until late July 2010 - not until about 1 1/2 yrs after my first bout of ON.

[zoefromsussex]

Hi Kelly, so you had quite a gap between attack's too. I guess that's why the neuro wonders if both my eyes are down to the same attack? It's been less than four months between the ON in each eye. I've got the letter from the neuro here and he says relapsing optic neuropathy (mitochondria cytopathy/CRION sarcoid) were unlikely given my positve LP & MRI. Have you been dx with RRMS since 09?
I'll keep you posted as to what happens next but I must admit I feel absolutely like 'normal' apart from my vision!
Zoe

[anon07072023]

Yes, I had ON for the first time in my left eye Feb '09 then in my right eye in Aug/Sept '09.  Then I had ON again in my left eye Oct 2010.  

I have a dx of RRMS but I always wonder if I have PPMS, since I've never had a relapse, just a slow steady progression.  My corrected vision is 20/40.

I'd be VERY interested to know what other diagnosis besides RRMS he's thinking about.  Maybe you can let us know if you find out?

Good luck,
Kelly

[zoefromsussex]

Thanks Lulu, I see what you & Julie are saying and the doctor isn't saying its unusual to have more than one attack. He's wondering if this is more than one attack though or whether it's one single attack which is now affecting the other eye. It was this that surprised me because I didn't realise an MS attack could last this long (almost 4 months so far!) I was just wondering whether I really do have MS at all as I've read about relapsing remitting ON? The neuro says MS is more likely because I have fairly typical lesions on the MRI & banding in my csf. Do some people with MS get attacks in the same part of the body every time? I've had other stuff such as numbness, tingling & slight weakness and weird dizziness (hard to explain the exact sensation) and the neuro says it's all down to the same attack and should settle down over time.

[jujuminx]

I am with you all. Confused about what dr is saying.

ON isn't an uncommon sx of MS, so not sure why more than one episode would lead dr to believe you don't have MS???

Julie

[Lulu54]

I am with Julie in wondering what the doc is trying to say.. It is not at all unusual for someone to have ON more than once.  Nor is it unusual to not return to the same visual acuity as you had before the attack..  When you see the eye doctor, be sure to take this list of questions and talk about them..  

Good luck, lulu

[zoefromsussex]

Hi Julie,
He's questioning the dx because it's been less than 4 months since the ON in the first eye and my vision hasn't yet recovered He seems to think it's one single episode which is now affecting the other eye whereas I think it's two separate event's. I hadn't really considered PPMS as I just kind of assumed most people were told RRMS. I haven't really had much let up of symptoms since the ON first started but the neuro says that's normal after a disturbance within the CNS. I'm not seeing him again until April but I have been to see my regular doctor and he's agreed to refer me to the eye dept at the hospital. Just out of interest, do you know your acuity after recovering from ON? Mine is 6/24 so not great!
Zoe

[Sarahsmom46]

I don't understand why your doctor is questioning the RRMS on your having a 2nd bout of ON.  Did you ask him?  

I have had 2 bouts of ON, the first being in 2009 and the 2nd this past Oct 2011.  I know many people with MS who have had more than one episode of ON and as far as I know, their RRMS diagnosis was not questioned.  Do you think he is leaning toward SPMS or PPMS or not MS at all?  

Sometimes doctors tell us stuff in the exam room and we are so shocked that we don't speak or think to speak up and ask what they are thinking. until after we leave the office.  When are you going to see him again?

Julie