Different DX???

[zoefromsussex]

Hi,
I have just received a letter from my latest neuro outlining my appointment and in it he says he wants further bloodwork as I had bilateral ON within 6 months of attacks and he says I have had a poor recovery of vision.
He says my mobility is reassuring with an EDSS of under 3.
I'm awaiting the results of my latest mri but already have a dx of MS (confirmed by LP, mri, vep and seperate attacks)
He said the mri was to decide whether to start me on Tysabri now but in view of the blood reuests, should I be thinking I might not even have ms? If so, what are other possible diagnosis?
I have permanently numb feet & toes these days but they have enough sensation to walk with, if that makes sense? Do you think he might be thinking NMO instead of ms? I never had an mri of my spine until this latest one so I don't know what state my c spine is in.
Any advice greatly appreciated! Thanks

[zoefromsussex]

Thanks for the info. I'm pretty certain mine are ms sx then, especially given the positive LP and the other tests and the neuro at the time said that although the lesion load asn't too bad (scattered white) it was in a pretty classic pattern for rrms and  vthe presentation of on with a history of 'pinched nerves' and visual disturbances was obbvious enough for them to get straight on the path of ms. I guess that makes me one of the lucky ones as it seems so many have a really hard time of getting a dx.

[anon07072023]

I still question the Dx because my LP was negative and I don't have very many lesions in my brain. In fact, when the radiologists typically read my MRI, they say that I have just a few in my brain - basically, what's normal for the population. However, the MS specialist at the University said they missed 6 lesions in my brain, plus 3 black holes.  And my new neuro says I have a lot of brain atrophy for my age.

My eyesight has never returned to 20/20 and I have constant symptoms - especially spasticity.

I think your symptoms could probably be either or for MS or NMO.  

[zoefromsussex]

so would my sx be  more ms related or could nmo be possible?

[doublevision1]

Transverse myelitis is due to spinal cord lesions and can occur independently or as part of NMO.  NMO includes both transverse myelitis AND optic neuritis.

[zoefromsussex]

What's the difference between NMO and Transverse Myelitis? I don't know much about it other than one is known as Devics Disease.
What makes you doubt your ms dx? I still don't know what my spine mri shows as am waiting on my results but I know that the only real sx I get is constant visual problems and my feet are both numb. I can walk but can't wiggle my toes and sometimes it feels like my legs will give way but the neuro says my limb power, tone etc is reassuring and I'm only a 3 on the EDSS chart.
Like I say, my LP was positive and I do have brain lesions and burning/aching pains sometimes so I guess an alternative dx is unlikely?

[anon07072023]

NMO is one of the diseases my neuro though that I had, besides transverse myelitis.  My tests for NMO came back negative twice. I do have spinal lesions and when this first all started, I had optic neuritis in my left eye in Jan '09 and then in my right eye in Aug or Sept '09.

Even with my Dx of MS, sometimes I still wonder....

[zoefromsussex]

Thanks for the info. I was just a bit curious as to why he was suggesting further blood tests when I already have a dx but I agree its reassuring to have such an attentive neuro and I was pretty lucky to get a referral to him as he is the ms specialist for the south east and he runs the tysabri routine for several counties. I think its my vision raising the uestions because I have never really regained my eyesight that well and I score 1 out of 17 on the colour plate tests and there has been other damage.
Anyway, having just spent a sleepless night due to burning, twisting pain in my feet, I'm pretty sure that ms is the correct dx!
Thanks again guys

[TheLightSeeker]

Hi Zoe.

While the newer NMO dx criteria according to the mayo clinic require 2
absolute (optic neuritis & ac ute myelitis) and 2 out of the 3 possible supportive criteria (1. brain MRI not complying with MS at onset, 2.spinal cord MRI indicating extensive lesion, and 3. positive NMO-IGg ), the significant differences, as sublte as they might  be between MS and NMO, are distinct (but not necessarily conclusive for dx as they are not all present in all NMO patients):
1 The acute nature of the attacks in NMO
2. Presence of NMO antibodies
3.Class ll inflammatory spinal lesions (distinct from MS lesions)
4. AQP-4 involvement

NMO has been associated with many systemic conditions, however, there have been no major clinical studies to support this.( I haven't found any )
Some neuros consider NMO part of the MS symptomology and the issue with this is that there's a different course of treatment for NMO, for better
results.

Hope this helps.
Niko

[doublevision1]

In NMO, O-bands usually dont show up in the LP, and brain lesions are uncommon. Bilateral ON is more likely in NMO than in MS.  The nature of spinal lesions is quite different in each condition, so that new MRI should add some very helpful information to the equation.  The  NMO-IgG blood test, if positive, is pretty much conclusive for NMO.  Unfortunately, if negative, it may still leave a question, as this test has a high rate of false negatives.  

About two years after my MS dx, my neuro had me tested for NMO after a bout of ON, because most of my lesions are spinal, only one on the brainstem, and no O-bands.  Test was neg, so I have continued to be treated for MS.  My relapse rate and severity has significantly decreased on Copaxone, so he's confident that the neg NMO-IgG was a true neg result.

Until your results come back, try not to stress too much.  I know this is easier said than done.  But whether you worry a lot or a little, it won't change the outcome, and you can burn that bridge when you come to it.  

I think it's reassuring to have a neuro that is paying attention to what's happening with you and is willing to rethink a dx as new information presents itself.  

Take care and keep us posted on how you make out, Zoe.