How many of us had RRMS and now secondary progressive?

That's a really good question, , and I hope our members will chime in here and share.

I know you were probably asking for more of a "roll call" situation, but I did some digging about the transition from RRMS to SPMS. Please take my findings with a grain of salt, as I wasn't researching too deeply. It looks about 10% of individuals transition from RRMS to SPMS within 10 years. That number jumps to 50% at 20 years and 93% at 30 years. Keep in mind that most of this data does seem to originate from one study done in 1989. And, it does not take into consideration treatment options and early interventions. Obviously, things have changed a great deal since then.

But, all this to say is that I know you are in good company. Quite a few of our health leaders are living with SPMS and have written a lot about MS in general and the transition to SPMS. One health leader wrote about it and I wanted to share a link to her piece -- https://multiplesclerosis.net/living-with-ms/rrms-spms-transition; I would be curious to see current data on how many people worldwide transition from RRMS to SPMS. Thanks for posing this question, as it has really peaked my interest and I am curious to see what kind of response you get!

Best, Erin, Team Member.

& I was diagnosed with multiple sclerosis in 2004. I had the RRMS form of it until 2014. It was clinically stable during those first 10 years.

A year later (2015); I started to experience a gradual decline of my MS with the development of serious symptoms. The series of these began with depression in 2015. Next, it was balance issues and peripheral neuropathy in 2016. From 2017 to 2018; moderate fatigue and cognitive decline began to appear. I suffer from all these symptoms to this day in a very severe and relentless manner.

My MS medications (DMTs) still have prevented new activity on my brain MRIs (since 2015); however, as of 2015, my MS has been slowly progressing. This is when I believe I entered the Secondary Progressive (SPMS) stage of it. It wasn't until an appointment in early 2025 that my doctor officially declared that I am in the SPMS stage of my MS.

SPMS is difficult to determine by doctors for their patients. This is because there is no definite marker that doctors can use with their patients to diagnose it. The best way is doctors reviewing their patient's medical records to see the gradual decline of MS in their case.