The only thing the DMDs do is stave off relapses, rate of decline is not helped but to stave off the relapses...if one has relapses with active lesions. No one can can base their own progression by someone else's progression. The thing I think seems the strangest about being dx ppms is that the earliest lesions had to come with some kind of activity/relapse, lesions don't just magically appear out of nothing. Yes, they appear naturally with age and smoking apparently, but then it seems everyone, ms or not, would have some symptoms while the lesions are forming, only without progression or triggered to cause reoccurring symptoms other lesions being spawned.

I believe I am fully in progressive MS, but my neuro says I am "transitioning." There is no good test for whether you are still RRMS or progressive. Observation of your decline in abilities is the best measure. Many doctors are reluctant to label a person as progressive, because many insurers won't pay for DMDs for progressive disease, and the drugs can still help PRMS.

If you're not convinced or feeling the answer --- then absolutely. I'll tell you I really wish I would have just been pushier at the beginning . I even had a spinal tap & so many tests & even went to The Mayo Clinic & was misdiagnosed with having a stroke and having antiphospholipid syndrome. So even though I was still seeing a neurologist locally I was on Coumadin for a long long time and I asked my symptoms continued to get worse I was trying so hard to be accommodating to my diagnosis but things life was getting too difficult! And now here I am 15 years later with the diagnosis a primary progressive MS. I just got stitches in my head two weeks ago I just fell out of A wheelchair today in front of people and I'm only 42. If your body is telling me something listen to it. I thought I was listening to mine but I also was trying to pull up my boot straps and just do the best I could and compensate with my other working parts and muscles. Now I have to apply for disability retirement I I am losing my job ditch the PPMS. So my answer to you is if you do not feel comfortable with the answers that you have been given yet a second opinion even a third opinion. Until you feel like the doctors there on your side and are fighting for you.

I miss sports so bad!

Did you have a first & second flare? Active and inactive lesions?Lesions in 2 separate locations? I asked my neurologist how he came to the conclusion that I was progressive...I had a feeling what he would determine before my appt, but it was important to me that I ask how. Is your doctor an ms specializing neurologist? I'm glad my first neurologist referred me to the one who specialized, because I didn't have confidence in the first neuro due to his lack of confident "I don't know for sure".