Misti, I have been told the same thing, and all of my significant damage is in my spine as well.

The first consideration with only large spinal lesions, is that this is actually Devic's disease, not MS. Some professionals regard Devics as just a different strain of MS . . . but more and more evidence is pointing towards Devic's being a different disease process all together.

It may take time for them to figure this out though, but ultimately they will be looking for LARGE spinal lesions, with no (or few) brain lesions, and often ON occuring somewhere along the way. Those are the main considerations for a Devic's dx.

Either way, the available treatment options would theoretically be the same . . . CRABs, Tysabri, steroids, etc.

If this is MS, then the CRABs, etc. may help ward off "future" BRAIN lesions. I have had almost 18 yrs with this disease though, and I still don't have many brain lesions. The disease process, for me, has mostly centered in my spine . . . so all those years with a disease modifying drug would have been a waste of time, money, side-effects and risks (from side-effects of these potent drugs).

When it comes to spinal lesions, we don't have any real options. As I've come to interpret things, spinal lesions are not "inflammatory" (like brain ones). Steroids, CRABs, Tysabri, etc. are meant to try to control this inflammatory process in our brain . . . but have not proven very successful on our spines.

The BEST course of treatment that I have found for spinal lesions, is to avoid infection anywhere else in the body, eg. bladder, tooth, bacterial, flu, etc. This seems to be our best defense for not stirring up our spinal lesions.

If I was able to, I would probably try Minocycline, which is used off-label for MS. It is an antibiotic, which may help control infections. Unfortunately I am allergic . . .

Cherie

PS . . . I use Low Dose Naltrexone, which is off label for MS too. It has helped considerably.