Hi tweener8292,

It is true.  Progressive MS is rarely talked about, and when it is, it is usually Secondary Progressive. It is not fair. 

Only 10 - 15% of people with MS have Primary Progressive.  There is an information void, and the little information available is sometimes confusing because doctors see so few cases. I was surprised to hear how many people never even heard of Primary Progressive!

I wrote about Primary Progressive MS last May. I can tell you progression is slow, and there are often plateaus of no new symptoms or worsening of current symptoms that last a long time.  Treatment is usually a drug approved for relapsing/remitting, but is often not very effective. 

The National MS Society has more recent articles than mine. The Cleveland Clinic also has a nice write-up.  There are clnical trials in process and more planned, so things and information will soon improve.  I know it's hard to hold on while waiting for everything to get better.  Good luck.