Over the past few decades, the quality of life and life expectancy for people with multiple sclerosis (MS) has improved significantly. MS is a neurological condition that affects nearly 1 million American adults. New medications have slowed the progression of the condition.
However, people will generally experience a progression of MS symptoms and severity throughout their lives. There are four stages/types of MS progression:
There is no one set timeline or course of MS, but knowing the stage can help you understand and manage your MS.
|Clinically isolated syndrome (CIS)||1. An episode of neurological symptoms lasting at least 24 hours.|
2. Diagnosed after a single episode.
3. An MRI shows one area of myelin damage from the episode.
4. More than one area of myelin damage indicates a different MS stage.
|Relapsing-remitting MS (RRMS)||1. Characterized by a pattern of relapse and remission.|
2. People with RRMS often have no symptoms during remission periods.
3. Symptoms generally only occur during relapse.
4. The pattern of release and remission is predictable.
5. Might progress to cause more severe symptoms during relapses.
6. Can get more difficult to manage over time.
7. Can progress to become secondary-progressive MS.
|Secondary-progressive MS (SPMS)||1. Characterized by a steady progression of symptoms.|
2. More aggressive than RRMS.
3. Might have periods of remission.
4. Symptoms increase and are more severe with each remission.
|Primary-progressive MS (PPMS)||1. Slow and steady progression of symptoms with no remission periods.|
2. The most rarely diagnosed form of MS.
3. Symptoms might plateau but will not disappear.
4. Progressive difficult walking is common in PPMS.
The disease progression in MS can also be measured on the Expanded Disability Status Scale (EDSS). This scale measures how MS is impacting eight functional systems:
- visual function
- bowel and blade function
- muscle control and strength (pyramidal)
- balance and coordination (cerebellar)
- speech and swallowing
- thinking and memory
- sensory function
- all other difficulties
People in early stages of MS might only have mild symptoms in one or two of the functional systems. As MS progresses, more systems are more severe, and more systems are affected.
Having MS doesn’t mean that you’ll progress through every status on the EDSS. In fact, two-thirds of people with MS will retain their ability to walk and will never pass status 7.
In stages 1 through 4.5, people are still able to walk and retain independence.
|1||Minimal symptoms impacting one functional system, but no disability.|
|1.5||Minimal symptoms impacting more than one function system, but no disability.|
|2||Minimal disability symptoms in at least one functional system.|
|2.5||Mild disability symptoms in one functional system or minimal disability in two functional systems.|
|3||Moderate disability symptoms in one functional system, or mild disability in three or four functional systems. No difficulty walking.|
|3.5||Moderate disability in one functional system and more than minimal disability in several others. No difficulty walking.|
|4||Significant disability but able to perform self-care activities and live independently. Able to walk without assistance or rest for at least 500 meters (1,640 feet).|
|4.5||Significant disability and some limits to the ability to perform daily tasks. Still able to work and independently do most activities. Able to walk without assistance or rest for at least 300 meters (984 feet).|
|5||Disability is significant enough that daily activities are impacted. Might need assistance to work or perform self-care. Able to walk with assistance or aid for at least 200 meters (656 feet).|
|5.5||Disability is significant enough that self-care and other daily activities might not be possible. Able to walk without assistance or rest for at least 100 meters (328 feet).|
|6||Need a walking aid but can walk 100 meters (328 feet) without resting.|
|6.5||Needs two walking aids but can walk 20 meters (66 feet) without resting.|
|7||Uses wheelchair exclusively but able to transfer self in and out of the wheelchair. Able to use a wheelchair independently. No longer able to walk more than 5 meters (16 feet) even with aid.|
|7.5||Might need help transferring in and out of the wheelchair. Might require a motorized wheelchair. Unable to walk more than a few steps.|
|8||Needs assistance to use a wheelchair. Still able to use arms and perform some self-care.|
|8.5||Restricted to bed for most of the day. Still has some use of arms for self-care.|
|9||Unable to leave bed. Able to communicate and eat.|
|9.5||Unable to leave bed. Completely dependent and unable to communicate. Cannot eat or swallow independently.|
|10||Death from MS.|
Every MS timeline is unique to the individual person with MS. Not everyone who receives an MS diagnosis will progress at the same rate or experience all stages.
For example, some people with relapsing-remitting MS (RRMS) never progress to any other form of MS. They might not have severe symptoms or notice any progression of their MS. Other people might see a steady worsening of their symptoms.
Clinically isolated syndrome (CIS)
Clinically isolated syndrome (CIS) is diagnosed after a single symptomatic episode. The episode that leads to a CIS diagnosis results in inflammation and damage to the myelin of the nerves in your brain or spinal cord. It lasts for at least 24 hours and cause neurological symptoms, such as:
- vision disturbances
- an electric shock feeling in your limbs
- involuntary movements
You’ll likely have an MRI to help your doctor diagnose MS. Your condition will be classed CIS if your MRI only shows a single area of myelin damage. However, if the MRI shows more than one area of myelin damage, you’ll be diagnosed with another classification of MS.
Relapsing-remitting MS (RRMS)
Around 85 percent of people with MS are initially diagnosed with relapsing-remitting MS (RRMS). RRMS follows a pattern. You’ll experience defined and predictable flare-ups or relapses of your symptoms. You’ll also have periods of remission when your symptoms will not be present.
Over time, the symptoms you experience in relapses can worsen. Your MS might become harder to treat and manage. You might still experience some symptoms during remission. However, progression only occurs during relapses. Your MS won’t progress during remission in RRMS.
Symptoms you’re likely to experience during relapses include:
- vision problems
- confusion or other cognitive difficulties
- difficulty walking
Secondary-progressive MS (SPMS)
RRMS can progress to become secondary-progressive MS (SPMS). Generally, this occurs within 10 years of the initial MS diagnosis, but every not case of RRMS will progress to SPMS. In SPMS your MS will progress steadily. You might still have times of remission, but there will be a steady worsening of your symptoms with each relapse.
The symptoms of RRMS and SPMS are the same, but the progression looks very different. The steady worsening of symptoms is the primary difference between RRMS and SPMS. In RRMS you might have the same symptoms at the same severity in each relapse for years. In SPMS every relapse will increase in severity.
Primary-progressive MS (PPMS)
Only about 15 percent of people diagnosed with MS have primary-progressive MS (PPMS).
The disease progression in PPMS is slow and steady. There are no remission periods. Symptoms might plateau for a period of time and be easier to manage, but they will not disappear. Increasing difficulty walking is very common in PPMS. The exact rate of progression depends on your individual case.
MS can’t be cured, but treatment options can slow the progression and manage your symptoms.
There are a variety of treatment options. You might be advised to make lifestyle changes, take over-the counter (OTC) medications, or take prescription medications. The best treatment plan will depend on your symptoms and how your MS is progressing. Your doctor will work with you to find the right treatment plan for you.
Lifestyle changes that can help MS include:
- eating a healthy diet
- reducing stress
- adding movement to your day
- stretching often
- trying yoga, meditation, or guided relaxation
OTC medications include:
- pain relief medications such as naproxen, aspirin, or ibuprofen
- laxatives and stool softeners
Prescription medications include:
- corticosteroids to reduce inflammation during a relapse
- beta interferons to reduce inflammation
- immunosuppressants to reduce inflammation
- muscle relaxants for pain control
Other treatment options include:
An MS diagnosis can be overwhelming. It’s important to find support as you learn to manage your condition. Some great places to turn include:
- Reach out to an MS navigator for professional help finding support and resources.
- Find local support groups and events.
- Get 24/7 free emotional support using the Happy App.
- Call the MSFriends Helpline (866-673-7436) to get matched with one-to-one peer support.
MS is a chronic condition that can change and progress with time. Not everyone with MS will go through every stage of progression, and there is no set timeline. Knowing the stage of your MS can help you know what to expect and help you manage your condition.
There is no cure for MS, but you can slow down the progression and get symptom relief with a treatment plan.