Hi LA,

Devic's is something they can test for easily enough, out of the Mayo Clinic. There is a 30% false negative result, meaning they don't catch "all" the cases with that test .... but they would have to have reason to suspect Devic's before they would persue this angle.

Devic's presents with very large spinal lesions, 3+ vertebrae long, generally bilateral ON, and quite often less brain lesions (especially initially) then typical MS does. There are differences with the lesions somewhat too, although they can't ALWAYS tell the difference between the two diseases by looking at the location/shape of them.

The main difference between PPMS (or even RRMS, with mostly spinal lesions) and Devic's is that MS will not normally present with that size of lesions. From what you've told us/me, here and elsewhere, your lesions in the spinal cord are NOT large, but are instead numerous. This is more indicative of MS, whatever type.

I can understand why he might be leaning towards PPMS at this point though, cause you have not proven to be experiencing relapses. HOWEVER, deciding whether we are PPMS (vs RRMS) is a bit of an art too, especially when have is mostly spinal lesions.

Take myself, for instance .... I had (have) large spinal lesions, and ONLY one main attack that lead them to believe I most likely had MS. Fortunately for me, I healed very well from that attack, and was left with very little damage to my CNS. In your case, it seems as though you were left with damage from the get-go ... so it stands to reason you would have ongoing symptoms from then on.

I had no further (major) problems for 12 yrs; not even one relapse. Had I continued with ongoing symptoms/damage from that first attack though, they probably would have categorized me as PPMS early on. But, since I didn't have that damage plaguing me, and I didn't have any more bad attacks, I went into denial instead.

In your case, you haven't had any relapses over this two years, but two years isn't a long time to go without relapses ... especially when most our problem is in our spinal cord. Those lesions are often less dynamic than brain lesions, but when they do finally become active, they tend to be more damaging.

As I mentioned, it took 12 before I had another major relapse. When they did my MRI's (it was the first time I would let them) I only had the two big spinal lesions, and 2 - 3 small brain lesions. At that point it didn't much matter whether I had Devic's or MS ... because Devic's was just considered a variant of MS anyway. It was only recently that they started considering whether it was worth testing me for it, since they defined Devic's as a seperate disease and can test for it ... but in the end I opted out. I won't change what I do (as far as treatment anyway), so it's irrelevant to me.

However, if there is any reason to think this is Devic's instead, and you are currently on a DMD, then you should be tested IF you have LARGE ENOUGH spinal lesions. DMD's are considered not suitable for Devic's, and a patient might want to consider immunosuppressants instead.

Hope that all makes sense.

Cherie