Signs & Symptoms
Everyone is different and your experience of MS and its symptoms will be unique to you. We now know that even though the symptoms experienced will be different for everybody, the underlying disease process is similar.
MS progresses from the start, that is, when the underlying disease process begins and starts to affect the nerves in your brain and spinal cord. This process continues below the surface, even when you’re not experiencing new or noticeable symptoms. That’s why it’s so important to recognise, record and report any changes you notice in your body, or in how you think or feel, to your healthcare team as soon as you can. Recording and reporting your symptoms helps to track how your disease is developing. This can help ensure you get a treatment as early as possible, to help with your MS.
When, where, how often, and how severe your symptoms are will depend on where the nerve damage is in your brain and body. The type of MS you have is determined by how your symptoms appear (or disappear) over time, but remember that the underlying disease process that causes the symptoms is similar. See our page on types of MS and you’ll see that the different types of MS are, in fact, not all that different.
Read on to find out more about the different MS symptoms you might experience, and how you can manage them.
[Rebecca is sitting facing the camera and talking about her experience with MS. The video is 4:01 minutes long.]
Hi! I'm Becca. I have been living with MS for 14 years now. I was diagnosed when I was 21. But my symptoms really started when I was 19, and really looking back probably the fatigue and dizziness and moments I had in high school were probably also connected to MS.
But my first real symptoms when I was 19 started with numbness in my feet that crept up my body and lasted for about months at a time. I had these funny symptoms and was doing testing but it wasn’t until a reading week trip in third year university where I went with some friends to Cuba that the symptom came that really clinched my diagnosis.
We arrived Friday night and I woke up Saturday morning with limited vision in my left eye and… it was… it was as though someone had put a filter over my eye, and I couldn't see properly. And this really pushed my diagnosis over the edge.
I had this feeling like, the diagnosis was the end goal like I was trying to figure out what was causing these symptoms and then I would have an answer and it would be clear what to do. And then I was diagnosed with MS and told it's unpredictable and it's different for everyone and it was really scary to not be able to pinpoint what was going to happen and to really manage the unpredictable nature of MS.
And since my diagnosis I've had some symptoms come up, I had an attack where numbness again started with my feet and crept up my body and I was numb head to toe and it felt like I was wearing an invisible corset that I couldn't take off.
The scariest symptom that came with that attack was I lost fine motor skills in my hands. And at the time I was in school I was doing a lot of typing and writing, I am also a crafty person so I was knitting and crocheting and all of that had to stop.
But now my motor skills came back, but I still have residual numbness in my forearms and fingers. And I'm able to knit, crochet, I do pottery.
And you know the difference between my diagnosis and now, is that I really, initially wanted my neurologist to have all the answers. I really wanted them to be able to tell me what was going to happen, what was going to help, and I had to learn that I'm really the expert on my own body. MS is different for every single person. So, all I can do is pay attention to my daily symptoms, take note of what's coming up so that when I do see my neurologist I have some clear information to give her.
One of the biggest things I've learned with MS is that I need to figure out what I need in order to manage my symptoms and I need to ask for accommodations in order to make that happen.
I have learned that it's my job to manage and keep track and take care of myself on a daily basis, and really focus what I need in the moment. And that's how I sort of, keep myself from worrying too much about the future I pay attention to what I need and my hope really is that the more I take care of myself now, the more positive impact that will have for me down the line.
Symptoms: From weird to invisible.
Watch Rebecca's story below to see how she deals with her symptoms
Early symptoms of MS may be mild and will often come and go. But it’s important not to dismiss these early warning signs or brush them off as something else that’s unrelated to your MS – reporting them can help your doctor confirm an initial diagnosis or assess how your MS is developing.
Common early signs of MS include1:
The first symptom that led to my diagnosis was numbness in my left leg. After a few days it went away, but it returned in both legs and spread to half my torso, one arm, and my neck. After a few weeks it went away again, only to return about a year later.
My first MS symptom was weakness in my legs. However, it wasn't until I experienced double vision that a diagnosis was sought and reached.
The first symptom I experienced was numbness that started in my toes. Over a few days it crept up my legs, and I was then numb from the waist down for a month.
One morning in my early twenties I woke up with numbness and tingling throughout my lower body. Over the course of the next few days this progressed up my body (torso and arms). At the same time, I was also experiencing problems with my vision.
Noticing the unnoticeable
Physical MS symptoms like muscle spasms, difficulty walking and speech problems can be quite easy to notice and monitor. These are generally known as ‘visible’ symptoms. However, symptoms that are harder to see from the outside are also common in MS. These are known as “invisible” symptoms and include fatigue, depression, or difficulties with memory and thinking.
It’s often much harder to notice these symptoms, as it’s not clear if they are related to your MS. If your first symptoms of MS are invisible, they can go unnoticed for several years. So, it’s extra important that you take note of any small changes to your body and how you’ve been feeling and report these to your healthcare team, even if you think they’re unrelated to your MS.
The figure below shows some common visible and invisible symptoms of MS.
Talking to others about invisible symptoms
It can be challenging to explain some of these ‘invisible’ symptoms to others. However, if you tell your healthcare team exactly how you are feeling, it can help make sure you get the right treatment for you and support you need.
In some cases, it may also help to try and explain these issues to friends and family or work colleagues, to help them understand what you’re going through. Remember, they will only know what’s going on if you tell them.
A lot of people don’t understand what having MS means – they just think of someone with a walking stick or in a wheelchair, and don’t realize it’s mostly an ‘invisible’ illness.
What are the signs that my MS is progressing?
Most people are not diagnosed with MS until they experience noticeable symptoms. This means progression can go unnoticed for a long time, while the underlying disease process continues beneath the surface.
I received a diagnosis at 27 but I think I have had MS since I was 23, when I first noticed symptoms. That damage was continuing for all that time and I now have problems with my legs and I can’t run anymore. My advice would be to try to take this seriously early on and don’t hide away from it. Being proactive can help to reduce the progression and damage from MS.
Although the symptoms you experience will be unique to you, some are more common than others. The table below lists some of the symptoms of MS, and a description of what they might feel like.
Remember that although there are lots of different symptoms, most of them will come and go, and it’s very unlikely you will get all of them. Now, there are effective ways to help manage these symptoms too.
Click the links below to find out more about MS symptoms and how to manage them.
What does it feel like?
|Vision problems||Your vision might be blurry or you might have double vision, eye pain, blind spots or other effects on your vision. Some people even have temporary vision loss.|
|Tiredness||You could feel extremely tired or lacking in energy.|
|Pain||You might get aching, itching, burning or stabbing pains in different parts of your body. These pains can last a long time, or come and go.|
|Dizziness and vertigo||You may feel lightheaded or like the room is spinning.|
|Balance and coordination problems||You may feel unsteady and clumsy.|
|Muscle spasms||You could get sudden, uncontrolled, muscle movements and stiffness.|
|Cognitive issues||Your memory might get worse, and you might have difficulty thinking clearly (‘brain fog’) or with planning and decision making. You might find it harder to pay attention to things.|
|Speech problems||Your speech may be slurred, slow with long pauses, or seem weaker/quieter.|
|Swallowing problems||You might have problems swallowing, meaning food gets stuck in your throat, comes back up, or goes down the wrong way. It can make you cough and splutter.|
|MS Hug||You could feel a tight, squeezing sensation, usually around your chest.|
|Tremor||You might get uncontrolled trembling or shaking movements in your hands, arms or other parts of your body.|
|Sexual problems||You might find that you have less sex drive. You could also get erectile dysfunction, vaginal dryness, or have difficulty reaching orgasm.|
|Mood swings/ Depression||You could have mood swings, or you might notice changes in your behaviour or personality.|
|Bowel problems||Your bowel movements might change and you could have constipation or diarrhea.|
|Numbness and tingling||Parts of your body might feel numb, or you might get pins and needles, which mostly occurs in the arms and legs. These feelings may last a long time or may come and go.|
|Bladder problems||You may have difficulty passing urine (meaning you need to go but can’t) or find you need to go to the restroom more often. Some people might unintentionally urinate (incontinence). People with MS are also more likely to get bladder or urinary infections.|
|Hypersensitivity||You could have pain or discomfort, or other symptoms might get triggered from a light touch or heat.|
When I’m not relapsing, the symptoms that I most commonly experience are depression, pins and needles in both legs, pain, fatigue, headaches and migraines, and sensitivity to heat and cold.
A year after the symptoms that led to my initial diagnosis, I lost the feeling in my right foot, but just for a week. Since then, I haven’t had any more problems or symptoms.
I commonly get weakness in my legs, and tiredness.
Heat intolerance! I’m always too warm. I also experience minor balance issues.
I am particularly interested in any new MS symptoms my patients are experiencing, like whether old symptoms are flaring, and how they are tolerating their therapy.
I track my symptoms by telling my mom about them, writing them on a calendar and in my journal. I track when I notice a change in my symptoms, and I keep note of how long this change lasts.
Keep track of your symptoms. Having concrete information to share with your healthcare team will help them to understand your experience of everyday life and will help narrow down the best treatment options for you.
Tracking your symptoms will help your neurologist assess how your MS is progressing. It will also help them tailor your treatment to your MS. It can also help you to understand your personal MS journey, and keep a track of what works and what doesn’t when managing symptoms. You might find that simply writing these things down can make you feel better and take a weight off your mind.
Everybody’s symptoms will be different, and everyone’s experience of MS is unique. Talk to your healthcare team about the symptoms you’ve experienced to decide what disease management strategy will work best for you.
A few key things to remember when it comes to your MS symptoms:
Keeping track of your symptoms and telling your healthcare team whenever you notice a change (however small), will help ensure you get the right management plan in place to help with your MS.
These articles will help you keep on top of your symptoms, so you can keep on top of your life.