I just wanted to relay my story briefly. When all of this started happening, it was a rapid and radical decline. I went from walking and biking everywhere to walking with a cane within months. It got so bad that one MS specialist had me at an EDSS of 6.5 and told me it was most likely PPMS.

The other MS specialist he referred me to thought that I needed a power scooter and needed to file for disability pronto. He didn't agree with labeling me as PPMS so early on, though. As a last ditch effort, he put me on a schedule of pulsed IVSM every 3 months and started me on Baclofen and Provigil.

I slowly improved. I now do not use a cane (probably should just for distance and fatigue) and I am still an unusual case, but it is more obvious that I am definitely relapsing / remitting. Neuro #2 still labels me as atypical MS because of my presentation.

He refused to go along with Neuro #1 saying PPMS because I was too early into this to know. Exacerbations can last a long time and healing can be slow (despite averages that say weeks to months). For me to get to this point took 2 years. That is why he likes to observe a patient over years before saying it is PPMS.

I'm not saying things are rosy, but it is leaps and bounds from where I was in 2004. I've been holding my own for the last few years but have residual damage that he says is likely permanent.

I guess all I'm saying is to not let them label you as I think you are still early into this thing and don't let that label get into your head.