If you are living with secondary progressive multiple sclerosis (SPMS), you know that life feels different from how it used to be. For years, you might have lived in the RRMS world, waiting for an attack, treating it, and mostly bouncing back. But SPMS changes the rules. It’s less about the sudden storms and more about a slow, steady tide.
We looked at stories and forum posts from people walking this same path. Here is what they say life with SPMS is really like, in their own words.
Question: What causes the pain and tight pressure around the body known as an “MS hug,” how is it treated, and can it be avoided?
Answer: The causes of the MS hug aren’t entirely clear, but we believe it is caused by an inflammation or injury to the nerves of the central nervous system (CNS), consisting of the brain, spinal cord, and optic nerves. This inflammation interrupts nerve impulses and sends mixed signals to the body and the muscles. When experiencing these symptoms for the first time, it is often uncomfortable and disturbing. The term “hug” may sound inappropriate as a hug normally refers to a warm and affectionate feeling, unlike an “MS hug” that can be quite uncomfortable.
Question: What types of visual disorders may be caused by MS, and are any types of visual issues not typically associated with MS?
Answer: Visual signs and symptoms are common in multiple sclerosis and ultimately affect the majority of people with MS at some time in their lives. Problems occur when there is demyelination of the optic nerve or the brain stem centers that control eye movements.
For the average person, catching a cold is a minor inconvenience—a few days of tissues and cough syrup before bouncing back to work. But for those of us living with multiple sclerosis (MS), the narrative is often drastically different. We know that a “simple” bug can feel like a seismic event. As one community member vividly shared, “mundane ailments can knock us down for the count.” What might be a fleeting annoyance for our friends and family can hit us with the force of a freight train, leaving us drained and vulnerable.
We often talk about the “summer slide” when the heat wipes us out, but winter is just as complicated for our community. Some of us are celebrating the drop in temperatures, while others are dreading the daily pain. It really shows how different MS can be for everyone. We are all just trying to figure out how to handle the thermostat without losing our minds.
Question: What should care partners do if they suspect depression in their loved one with MS, and what are the treatment options?
Answer: Like other medical illnesses, depression is often a shared experience between the person experiencing it and their care partner. It’s helpful to be an empathetic listener and supporter, rather than believing that it’s up to you to fix it.
As we approach the season of giving, the Multiple Sclerosis Association of America (MSAA) would like to bring special attention to the many wonderful community members that we serve. With our mission of Improving Lives Today, MSAA genuinely strives to advocate for and prioritize the well-being of all individuals who have been affected by multiple sclerosis. Over the years, we have collaborated with so many inspiring people, and we are honored to be able to highlight their stories.
In the spirit of the holiday season, we would like to share the heartfelt story of mother and son, Monica and Brian, who both live with multiple sclerosis.
“I’ve learned that in any situation, if you are not advocating for yourself, you’re not going to get anything. My name is Monica Proctor Wilson, and I was diagnosed with multiple sclerosis on my 40th birthday after spending several years seeking answers to my symptoms. For four or five years, doctors kept saying that it was fatigue, and that I was overworked and needed to take a break. I believed it was multiple sclerosis, and I started asking about it. People would ask me, ‘Why would you want MS?’ I did not want MS. I just wanted to know what was going on with me,” Monica shared.
Dealing with changes to your vision due to multiple sclerosis (MS) can be one of the scariest and most stressful things you face. It’s a core sense we rely on every minute, and any trouble with it can feel overwhelming. If you’re struggling, please know you are absolutely not alone. Your challenges are valid. As one forum member shared, dealing with vision issues can truly “mess with your head.”
Sleep…. This word can generate a mixture of feelings for many. Some people find it so easy to just lay their head down, turn off the inside chatter of their mind for a bit, and fall into a good snooze. But for others, sleep is a tease- a taunting pleasure just out of reach, and for various reasons. For those living with MS, it’s very common fatigue symptom can be in constant conflict with sleep. Those who need to rest but find they can’t, or getting sleep at unwanted/inconvenient times, etc. We know that sleep is extremely important for our minds and bodies, but it’s not always easy to attain.
Question: What are the symptoms of anxiety, and how does anxiety differ from depression?
Answer: It is common for people with and without MS to experience anxiety from time to time. Anxiety can be helpful in fact, alerting us to dangers around us or focusing our attention on stressors. Anxiety, however, can become more problematic when it’s severe, pervasive, and persistent. Then it becomes a disorder: generalized anxiety disorder. At that point, it distracts from our quality of life.
