Thank you for explaining. They are working on treatments for PPMS and recently seem to have found one or two that just might work--ibudilast is one but it isn't available yet.

You might be able to decide for yourself what type of MS you seem to have. If you are having remissions--periods of time when you have no symptoms--you don't have a progressive type of MS though there is a type known as "progressive relapsing MS" that is rare. I believe that that classification (progressive relapsing) is going out of favor because it doesn't have much meaning when you think about it.

All forms of MS are probably progressive but some progress in a different way. The symptoms don't let up. If you're still having periods of time (days, weeks, months, even years) when you have no clear MS symptoms, you probably have RRMS.

They were giving the disease-modifying drugs to anyone with MS regardless of type but since those drugs haven't been shown to have any effect on progressive forms of MS, they no longer do that as much. Still, you will find neurologists who will prescribe them, maybe in the belief that doing something is better than doing nothing, and they probably won't do you any harm.

Is there any way that you can get a second opinion? Taking your test results and doctor's notes to another doctor and asking your question about possible early treatment seems like a good idea to me.

You might point out that you've heard that the earlier the treatment is started after diagnosis, the more effective it is likely to be.

You can probably find a doctor who will prescribe one of the MS drugs for you, even if there has to be a bit of fudging on how the prescription is written. Some doctors call it RRMS even when they know it's a progressive form. They want to offer you something, as I said.

Or maybe you never asked this doctor you have about being prescribed a disease-modifying drug? It sounds as if you don't communicate well with this doctor but if the lines of communication are still open, why not inquire?

Most neuros do want to see you if you're having worsening symptoms even if your next appointment was scheduled in a year. You might want to schedule another visit about the fact that you're feeling worse.