This type of multiple sclerosis affects just 15% of MS patients.
Multiple sclerosis, an autoimmune disease that attacks the central nervous system, can be split into two main trajectories: primary progressive MS and relapsing-remitting MS. While people with either type of MS may experience similar MS symptoms, the condition follows a different course in each.
“Primary progressive MS is a slow thing that happens over months to years,” says Michelle Fabian, MD, a neurologist at The Mount Sinai Hospital in New York City. “It’s more of a gradual symptom, and then it doesn’t typically go away.”
Affecting just 15 percent of MS patients, primary progressive MS is significantly less common than relapsing-remitting. The average age of onset is between 35 and 39, according to John Hopkins Medicine, which is older than the average age of diagnosis for MS overall.
Both types of MS occur when the immune system turns against itself. This part of the body is supposed to protect the body from dangerous pathogens, but instead, the immune system of someone with MS begins attacking crucial parts of the central nervous system: the brain, the spinal cord, and optic nerve, which connects the brain to the eyes.
Patients with relapsing-remitting MS alternate between relapses, or periods when new symptoms emerge or worsen, and remission, when symptoms subside.
With primary progressive MS, patients don’t experience relapses. “It comes on slowly, and it’s usually a walking challenge that happens over months and years,” says Dr. Fabian. With difficulty walking comes other challenges, such as fulfilling job responsibilities or everyday activities.
In MRIs, patients with either form of MS tend to show nearly identical results. Those with primary progressive MS sometimes have more lesions in their spinal cord than their brain, according to Dr. Fabian, but not necessarily. (Learn how multiple sclerosis affects the body here.)
Because test results cannot always distinguish between the two forms, talking to the patient is often the most revealing way to detect primary progressive MS. “Five years ago, they might have had just a touch of a trouble walking,” says Dr. Fabian. “Two years ago, it was more, and now it’s more. It’s a very different story.”
Treating primary progressive MS has posed more of a challenge than relapsing-remitting. A new treatment has recently been approved that can treat both forms of MS and will hopefully begin to change the outlook for the men and women diagnosed with primary progressive MS.
Dr. Fabian is the assistant professor of neurology at The Mount Sinai Hospital in New York City.
00:00:00,000 --> 00:00:00,500
00:00:02,070 --> 00:00:07,460
Primary progressive MS is a slow thing
that happens over months to years.
00:00:07,460 --> 00:00:12,120
So it's more of a gradual symptom,
and then it doesn't typically go away.
00:00:12,120 --> 00:00:15,500
It might kind of plateau,
flatten out, but it doesn't go away.
00:00:15,500 --> 00:00:20,208
00:00:20,208 --> 00:00:24,290
Multiple sclerosis is a disease
of the central nervous system.
00:00:24,290 --> 00:00:26,290
Is an autoimmune condition.
00:00:26,290 --> 00:00:31,150
So that means the immune system
is activated against itself.
00:00:31,150 --> 00:00:35,300
The immune system is the system that we
have in our body to protect against virus,
00:00:35,300 --> 00:00:37,390
bacteria, any sort of infection.
00:00:37,390 --> 00:00:42,190
And instead of doing that, for some reason
in multiple sclerosis, it turns inward and
00:00:42,190 --> 00:00:47,530
the immune system attacks the parts of
the central nervous system, the brain,
00:00:47,530 --> 00:00:52,650
spinal cord, and the optic nerve, which is
the connection from the eye to the brain.
00:00:52,650 --> 00:00:56,880
The two main sorts of MS
are relapsing-remitting MS and
00:00:56,880 --> 00:00:59,050
primary progressive MS.
00:00:59,050 --> 00:01:06,670
In MS relapse, is a patient that has a new
symptom that is somewhere on their body,
00:01:06,670 --> 00:01:10,460
localized on their body, and
it lasts longer than 24 hours.
00:01:10,460 --> 00:01:14,643
And it comes on usually over
the course of days to weeks,
00:01:14,643 --> 00:01:18,000
and then it goes over days to weeks.
00:01:18,000 --> 00:01:22,900
Primary progressive MS, so the difference
with that is that a patient won't have
00:01:22,900 --> 00:01:28,210
these relapses where it's something that's
new over days and weeks, and goes away.
00:01:28,210 --> 00:01:31,760
With Primary Progressive MS,
they've never had a relapse, and
00:01:31,760 --> 00:01:35,440
it's usually just something
that's a little bit insidious.
00:01:35,440 --> 00:01:36,890
It comes on slowly and
00:01:36,890 --> 00:01:41,548
it's usually a walking challenge
that happens over months and years.
00:01:41,548 --> 00:01:48,340
On MRI, relapsing-remitting MS and primary
progressive MS can look almost identical.
00:01:48,340 --> 00:01:51,550
There is a slight difference at times
where patients with the primary
00:01:51,550 --> 00:01:52,600
00:01:52,600 --> 00:01:56,860
they may have more lesions in their
spinal cord compared to their brain.
00:01:56,860 --> 00:01:59,120
But truthfully, they also may not.
00:01:59,120 --> 00:02:01,890
The most important thing always
is just to listen to the patient.
00:02:01,890 --> 00:02:03,860
And the patient will tell you the story.
00:02:03,860 --> 00:02:08,410
And it's either one where they've had
some episodes that came and went.
00:02:08,410 --> 00:02:12,970
Or a person with primary progressive MS,
in contrast, they would just tell you that
00:02:12,970 --> 00:02:18,020
five years ago, they might of had
just a touch of a trouble walking.
00:02:18,020 --> 00:02:20,840
Two years ago, it was more,
and now it's more.
00:02:20,840 --> 00:02:23,310
So, it's a very different story.
00:02:23,310 --> 00:02:27,670
Primary progressive MS, and progressive
MS in general, has been a greater
00:02:27,670 --> 00:02:31,960
challenge in terms of getting treatments
available for those patients, but
00:02:31,960 --> 00:02:37,050
just recently we had the first treatment
approved for primary progressive MS.
00:02:37,050 --> 00:02:40,360
It is a treatment that also works for
relapsing remitting MS.
00:02:40,360 --> 00:02:44,610
And so it's another one of these
treatments that decreases inflammation.
00:02:44,610 --> 00:02:49,570
But it showed that it worked in a group
of primary progressive patients.
Abdelhak A, Weber MS, Tumani H. Primary progressive multiple sclerosis: putting together the puzzle. Front Neurol. 2017;8:234.Primary progressive MS (PPMS). New York, NY: National Multiple Sclerosis Society. (Accessed on April 12, 2021 at https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS.) Primary progressive multiple sclerosis. Baltimore, MD: John Hopkins Medicine. (Accessed on April 12, 2021 at https://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/primary_progressive_multiple_sclerosis_134,55.)