Meet Sophie
"It wasn’t easy news to digest"
There are different types and phases of MS. Changes to MS symptoms can be subtle and over a long period of time, so they may go unnoticed if you aren’t specifically looking out for them. Symptoms (and disability) can sometimes improve or worsen depending on the phase of MS. Experiencing fewer relapses can be a sign that your MS is changing and potentially transitioning to the second phase of the disease.
Understanding your MS
85% of people with MS are initially diagnosed with the Relapsing Remitting form (RRMS), where symptoms flare up (relapse) but then quieten down. This pattern of symptoms may change as time goes on and this may signify progression to the next phase of MS: SPMS.
What RRMS feels like
Unpredictable but clearly defined relapses
New symptoms appear or existing ones get worse
Between relapses, recovery is complete or nearly complete
It’s important to know that neurological progression in RRMS can be silent. People living with RRMS may experience worsening symptoms and/or changes in their abilities without associating these with a relapse.
Most people who are diagnosed with RRMS will eventually transition to Secondary Progressive Multiple Sclerosis (SPMS) in which there is a progressive worsening of neurologic function (accumulation of disability) over time. These may lead to other physical, emotional and cognitive symptoms.
What SPMS feels like
Progressive worsening and fewer relapses
Sometimes, there are minor remissions and plateaus
Primary Progressive Multiple Sclerosis (PPMS) is characterized by a slow buildup of disability and relapses are not defined. Symptoms may stabilize for some time but there are no remission periods. Approximately 15 per cent of people diagnosed with MS have PPMS. About five per cent of people diagnosed with PPMS experience occasional relapses with steady worsening of the disease over time from the beginning.
What PPMS feels like
Increased disability
No remission periods
Undefined relapses
Additionally, MS progression can be "clinically silent", which means that people living with MS can still experience worsening symptoms and/or disability over time without associating these with a relapse. That’s why it’s important to talk to your care team about your MS, even if you have not experienced a relapse.
Learning you have MS can be an overwhelming and confusing time.
It’s normal to feel grief after an MS diagnosis and to wonder about how this diagnosis will impact your life. Grieving an MS diagnosis can be complicated. You might feel a variety of different emotions, including sadness, sorrow, anger, guilt, regret, or frustration. Additionally, the grieving process is not linear and can be ongoing. You may feel grief for each change, or loss, that you experience related to your MS.
You Are Not Alone
There are an estimated 90,000 Canadians living with MS and on average, 12 people are diagnosed with MS every day.
If you are suffering or struggling with your diagnosis – speak up. For many people living with MS, emotional healing comes from telling their story. There is a community of people living with MS who may have had similar experiences and who can relate to you.
It’s important to start treatment for your MS as soon as possible
People treated soon after being diagnosed with MS may have better results than those who delay treatment. Lasting damage to the nervous system can occur in the early stages of MS. Early treatment may slow down the progression of physical disability.
Additionally, MS progression can be "clinically silent," which means that people with RRMS can still experience worsening symptoms and/or disability over time without associating these with a relapse. On the other hand, some people living with RRMS might experience long periods of time without disease progression or symptom worsening. Everyone is unique.
Keep an open and ongoing dialogue with your care team about your MS symptoms to make sure you are managing your MS in the best way possible
When you have MS, it’s important to self-advocate. When you speak up or act on behalf of your rights and well-being, you’re self-advocating. For people living with MS, self-advocacy can enable them to have more control over how MS affects their lives. It’s important to self-advocate, whether you’re with family and friends, colleagues or your care team.
Newly Diagnosed with MS
Bonnie Blain, registered MS nurse
Self-Advocacy in MS Care
Dr. Warren Berger, neurologist
MS Symptoms
MS symptoms are not only unpredictable, they show up differently from person-to-person. The disease affects the brain and spinal cord by damaging the protective covering (myelin) and causing inflammation. This means that each person’s symptom depends on which part of the Central Nervous System (CNS) is affected.
Physical
Many of the physical symptoms of MS are related to damaged nerve function. That’s why people living with MS can see changes in their mobility, vision, strength, sensory processing and sexual health.
Cognitive
Between 40 and 70% of people with MS will experience subtle cognitive effects, which makes it easy to think they are just changes that come with aging. Report cognitive symptoms – such as memory loss and low processing speed to your doctor.
Emotional
People with MS tend to go through different emotional reactions. Some common MS symptoms are depression, anxiety, and low quality of life. If you notice any emotional changes you may think are related to your MS, let your doctor know right away.
Check out My Rules to define your rules
Your message was succesfully sent.