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MS vs. NMO

Unable to diagnose - anyone been there?  Lesions in the spinal cord and an optic neuritis episode, "unremarkable brain". Locations suggest NMO; however, lesion type/size are a better fit for MS. NMO antibody test negative however it's a rule-in not a rule-out test. My Neuro was stumped so she sent me to the Mayo; who confirmed that she was correct to be stumped.  This leaves me wondering do I go with the more aggressive treatment for NMO, Copaxone (there are some indications that other MS treatments may exaserbate NMO) or wait and see.  I'm 37 yr old and this all started probably about 3 years ago; just for the first 2 years i thought it was a chiropractic issue that seemed to go away with treatment and physical therapy.  However in the last year, the chiro sent me to the ER for an MRI.  Since then I'm at 2 TM episodes (T2-T3 and T5) and 1 ON.  

I'm not happy with doing nothing; however, strong immunosupressents concern me as well.  

Any thoughts?

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382218 tn?1341181487
A year and a half or so after being dx'ed with RRMS in 2007, my neuro suspected it might not be MS after all and actually might be NMO.  This was following an episode of optic neuritis.  I too have spinal lesions and a mostly unremarkable brain except for one brain stem lesion.  I too had the NMO-IgG test which was sent to Mayo for analysis.  Came back neg which didn't give me much reassurance for the reason you stated.  However it seemed to have satisfied my neuro who said we would continune to treat as MS with Copaxone unless something new happened to suggest otherwise.  I also saw my neuro-opthalmologist around the same time who concurred, because of the neg result and because NMO is so rare.  He's based in Edmonton, AB, and had only one patient with it out of a very large patient load.  Since then nothing new has happened to suggest this is NMO.  I had a relapse last summer that was fairly similar to previous relapses, mainly sensory symptoms but no eye involvement this time.  My relapse rate reduced substantially after starting Copaxone which seems to suggest I'm responsive to it.   If this were NMO this would not be the case, as you point out the treatments are not the same.  My latest MRI still shows lesions at C4 and C6 and the brain stem one is barely visible now.  No new lesions visible in past three years. His thoughts are that if this was untreated NMO we'd be seeing more damage by now.  

Unfortunately I don't think any of this may be very useful in the dilemma you face>  I understand your concerns about doing nothing....I wouldn't be comfortable with that either.  Did the Mayo doc or your own recommend which path to take, given their uncertainty?  Did they mention whether re-taking the NMO-IgG within a certain period of time would be helpful, ie: if you continue to get a neg result, is this confirmatory or does this leave the question as open as it is now?
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Avatar universal
Hazlis - good point on the LP.  I have had one.  It was a bit scary to think about but it wasn't so bad and gave the Doctor and I a ton of information.

Very similar situation here, on the O-bands.  I think that's part of the reason my Neuro can't rule out NMO.  Time will tell.  In the mean time I think I'm going to try to get stronger.

This is all a bit overwhelming but I am learning more about life along the way.
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Avatar universal
Yes, thank you for the clarification.  My LP showed O-bands and a subsequet MRI showed lesions on my spine.
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382218 tn?1341181487
Hazlis, great point about the LP, I'd forgotten about that aspect of the dx.  In MS there are usually, though not always, O-bands in the CFS.  in NMO there usually are not.  I had none which was another factor that caused my neuro to second guess my MS dx.  

when you say your LP showed you had lesions on you spinal cord, do you mean that you have O-bands?  O-bands point to MS but don't indicate the location of lesions.
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Avatar universal
Sorry, I forgot to include that the spinal tap also showed I had lesions on my spinal cord.
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Avatar universal
Has your doctor considered doing a spinal tap?  I started with gait issues, but had a normal brain MRI.  Some time later I had an episode of optic neuritis.  Because I had a normal MRI, I was told to just be aware of any other symptoms as my chances for MS were 10x more likely to happen, but it didn't appear I had it then.  I developed more symptoms a few months later, so I saw a different neurologist.  The MRI was normal.  As a last resort he performed a spinal tap.  That spinal tap confirmed I had MS.  I know most people don't like the idea of having a spinal tap, but it is something to think about.  Especially if your doctor is stumped.  I have been on Copaxone for 3 years, and I have responded very well to it.  
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Avatar universal
Thanks for your response!  It was helpful to hear from you. I met with my Neuro today and I'm going to start with Copaxone. We'll see how it goes and what comes next.
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