Nine years after my first brain mri that showed “nonspecific demylenation” and three years after official diagnosis, I want to tell you what PRMS is not (to me personally).
PRMS is not curable. There are no remissions. It’s not well known or commonly heard of. Odds are it’s not your friend’s ms. It’s not what you want to hear when diagnosed with multiple sclerosis.
What IS PRMS?
Progressive Relapsing Multiple Sclerosis is the least common form of the disease and said to be more commonly diagnosed in the late 30’s/40’s although it’s diagnosed at all ages. I was 44 when I had my first brain mri to rule out ms. Only 5% of people who have Multiple Sclerosis have PRMS (progressive relapsing multiple sclerosis). Similarly, approximately only 10-15% of people who have ms have PPMS (primary progressive multiple sclerosis). PPMS is usually diagnosed later in life (40’s), although it is also diagnosed at all ages).
PRMS is when you progress from the beginning and experience relapses. It’s also known as PPMS with activity.
ie: going up and down the steps became more difficult with time as did walking. In addition to the chronic progression you have “relapses”: a sudden acute episode where you may lose feeling on one side of your body and/or experience other sensory issues that do not get better or go away.
Progressive relapsing ms is an insidious type of ms, often times difficult to diagnose, that slowly steals your mobility and abilities. Nine years ago I was caring for and lifting patients until I couldn’t. Three years ago I was painting my home and wondering why I couldn’t paint like I always had. Eighteen months ago I was riding my bicycle sixteen plus miles.
A year later, six miles before having to stop altogether. Six months after giving up cycling I was walking up to five miles a walk. Walking any distance has now become increasingly difficult. Like I said, progressive ms is an insidious thief.
Losing my balance is a regular occurrence. There’s so many facets to this disease, many invisible, and they’re often the toughest.
Currently there are fifteen + treatments for relapsing remitting multiple sclerosis versus the ONE treatment available for primary progressive multiple sclerosis. 85% of people who have ms have RRMS and have fifteen + treatments to choose from.
As someone who has PRMS, in addition to the progressive (neurodegenerative) part, I have also experienced relapses and have sensory issues. It’s a double whammy. This double whammy gives me the option to choose from the fifteen disease modifying drugs for RRMS that would treat the relapsing part of my ms but not the neurodegenerative part known as progression. Unless I opted for the ONE treatment available that is said to slow progression and prevent relapses. (That’s another post). Keep in mind it’s said that relapses are not very common after a certain age although I had a major relapse at age fifty. Roll the dice! Aren’t all of these treatments a gamble?
No matter the type of ms, we are all aware what this disease has done and what it can potentially do. We all experience loss regularly, mourning our old selves and our old lives. We struggle and we persevere. We struggle again and we find a way to persevere again. We’re constantly adapting to an ever changing way of life and we live it and if we’re lucky…..we have an old friend by our side.