Thank you for sharing the experience of what the progression has been like for you, Anne. I've had my ups and downs and even using my scooter for school. I believe we just have to keep doing the best that we can for ourselves. Of course, I think I'm going to beat this thing some day but in the meantime, we do have to live the best life we can, don't we?

Thank you so much for this post. I was dx RRMS but just recently my sister (who is a nurse and was once with the MS Society) observed that I seem to now be secondary progressive because I have constant discomfort in my legs.

Apart from my legs feeling so crappy all the time, I have had no other symptoms and have only ever had three very minor flares since dx.

I wonder if there is a definitive observation of when RRMS becomes secondary?

Also, if the MS has progressed, is rebif still effective?

(these are Qs for my neuro but I wont be seeing him till the New Year.)

Thanks so much for sharing your story. It is very helpful. They way you present it helps take the fear out of it.

I started falling a bit lately and my legs are pretty wobbly most times. I have my cane and a rollator that I use for longer walks...which doesn't seem to be all that far these days. The stairs can sometimes be a bit tricky, too. It makes me a bit concerned about progression.

My next neuro visit is in October and we'll see what he says.

Thanks so much for taking time to write. I know you are going through quite a rough time. Praying for you.

Thanks for sharing your experience, sounds like you are adapting to the changes with a fighter's spirit! That definitely helps! Attitude makes a huge difference in quality of life...(I think really that applies to everyone!) I do try to focus on "now" more than "later" so I just get the most out of now that I can! MS is a "designer disease" and each person has a different experience, the symptom that most people have is fatigue, after that it gets very individualized.

What I read said it is not just 50% of people who convert from RR to SPMS.... The part about 50% was ... 50% of RRMS patients become SPMS within 10 years of the initial RRMS diagnosis. What I remember reading originally said "within their lifetime almost all RRMS becomes SPMS at some point" and that sentence stuck in my mind, and I had to "hit pause" on the research...

But I just looked it up quickly to find where I read that sentence and, I guess there is some difference in opinions about the second 50%.....the 50% within 10years of initial diagnosis IS on every page but, then what it says about the other 50% differs a little

National MS society says:
"Of the people who are diagnosed RRMS Most will eventually become SPMS".

MSconnection .org says:
It used to be assumed that 80 to 90% of people with RRMS would eventually develop SPMS within 25 years (50% within 10 years) of diagnosis, although people living with MS were not followed for a sufficient length of time to really know what was happening.
...
It goes on to say that researchers are trying to get more accurate numbers, but that the older you get with RRMS the lower the chance of conversion is (dropping below 1% at age 75),

and that article is 2 years old
.....
Sometime in the first year after I was diagnosed someone asked me about the types of MS and I couldn't remember all of them, so I googled it and accidentally came across the info about SPMS and it kinda shocked me because I had no idea. (My doctor was giving me information slowly, because that's what I needed ... it was too much all at once..)
I had to let it absorb before learning more... When I was diagnosed with MS it all happened very quickly, I think it was only 2 or maybe 3 months between the first mention of the possibility of MS and being diagnosed with it. (That's insanely fast). So, it was the first time something medical came up and I didn't "do the research" right away and let myself just focus on 1 thing at a time.

I think taking it with 'baby steps' is the only way to deal with our disease. I doubt very many of us reacted immediately after diagnosis with too positive of attitudes. Time helps with perspective. And I am also a believer of the power of positive thinking. So, positive thoughts out to all of you!!!!!!!!!