Symptoms of MS to Be Aware Of
When I was diagnosed with multiple sclerosis (MS) 10 years ago, I was only aware of a few symptoms.
My Experience With MS and MS Symptoms
I had pins and needles in my right hand and a slight dragging sensation in my right foot. Both these symptoms only manifested themselves after exercising and would return to normal after a period of recovery. I would notice my foot more after running on the treadmill at the gym, for example, or a brisk walk to work.
It was easy to live with these symptoms, and for a long time – I ignored them, hoping they’d go away.
I only went to see my doctor after a friend suggested there might be a treatment for my symptoms, and I hoped I’d be given a pill or physiotherapy or something. Ironically, that friend was working for a pharmaceutical company at the time who made disease-modifying drugs (DMDs) for MS, so I think she had her suspicions!
It was such a shock when I was finally diagnosed. I remember looking up MS on the internet and being overwhelmed by all the information available, and I was also surprised by how many symptoms there were and being scared to death that I’d end up experiencing them all at once.
I was encouraged to read that it’s unlikely I’d experience all the symptoms listed and even if I did they wouldn’t hit me all at the same time.
The severity of the symptoms also varies, so some will be worse than others depending on numerous different environmental factors.
It’s also important to remember that no two people with MS are the same. Just because disability has progressed rapidly for some people with MS, it doesn’t mean the same will happen to you. It also depends on where MS damages your brain and spinal cord or whether you’re having a relapse.
I found that once I understood more about MS symptoms, I realized how many more I experienced and began to piece them all together. If I hadn’t even realized my pins and needles, and foot drop were linked but as soon as I was diagnosed it all started to make sense.
Looking back, it’s now apparent I had my first relapse when I was 17 and went numb all down my left side. As I recovered quickly and had no other episodes for years, I only linked this to MS once I understood the condition.
Nine Symptoms of MS
In this article, I’ll look at some common symptoms of MS and will include tips on how to deal with them.
Fatigue
This is, perhaps, the most common symptom and experienced by 80 percent of people with MS, with 60 percent describing it as their worse symptom. Fatigue is not the same as tiredness and often friends, family and employers find it difficult to understand.
I went on a fatigue management course a few years ago and learned that there are different aspects to fatigue, primary and secondary.
Primary Fatigue
This occurs as a direct result of having MS. The body slows down reaction times because of the damage to the central nervous system, causing fatigue. It can take the form of “lassitude" which is an overwhelming sense of tiredness unrelated to the amount of activity carried out.
Our bodies can “short-circuit" in small muscle groups too due to damage following repetitive movements. I’ve had to rest numerous times while writing this article because of the fatigue in my hands.
I keep making mistakes as my hands slip on the keys, and when I look at what I’ve written it’s more gibberish than usual! This is because the muscle groups in my hands become fatigued and need to rest so they can recover.
Secondary Fatigue
This isn’t caused by the disease process but by other related factors, such as:
- Depression.
- Sleep disturbance.
- Walking difficulties.
- De-conditioning.
- Infection.
- Local environment.
- Medication.
Managing secondary factors goes a long way in reducing how fatigue impacts me. If I make sure I eat properly, avoid stress, get enough sleep, rest and avoid alcohol l find my general fatigue isn’t too bad.
I also find that planning and prioritizing the tasks I need to accomplish is the key to avoid getting frustrated. I can’t do everything, so I need to remember this and plan accordingly.
In my experience, fatigue can cause further symptoms to develop so taking it seriously and making lifestyle changes can avoid further symptoms occurring. Symptoms can also appear much worse when we’re run-down, ill or have an infection. These symptoms are temporary and will improve as you start to feel better.
Mobility Issues
This is, by far, my worse symptom. What started off as a slight dragging of my right foot has developed into foot drop in both feet as well as an inability to lift my knees.
This makes walking extremely difficult, and sometimes I get stuck because I can’t move my right foot. I have to cling on to door frames or furniture while leading with my left foot and dragging my right behind me.
Stairs have become impossible, so I now live in a single story house with access around the back. This has been a gradual process though, and I believe smoking had a considerable impact on me, and I wish I’d quit when I was first diagnosed.
Thankfully, there are solutions to mobility difficulties, and these will vary depending on your problem and its severity.
Mobility Aids
- Walking sticks – I started out with one stick, and I remember being horrified with having to use one. Now I wish I could go back to that time! I then needed two sticks as my balance started to get worse, but I found this so difficult and was unable to hold anything while walking.
- Walker – this is where you hold on to a frame, sometimes with wheels, and push it along to help you walk. I need to invest in one of these as I worry about losing muscle tone in my legs and would like the gentle exercise.
- Wheelchair – the ultimate walking aid! This is such a big step though, and you need to feel ready and accept you can’t walk as well as you used to.
- Mobility scooter – this is what I use and feel free by finally accepting my need for wheels! I find people ignore you in a wheelchair but don’t in a mobility scooter and I haven’t figured out why this is.
I found that trying to keep mobile was so exhausting that it made everything else impossible. Now I use a scooter I can keep working, go out with friends and family and be as independent as possible. It also reduces the impact fatigue has on me, preventing further relapses.
Cognitive Problems
Cognition refers to memory and thinking and describes how we concentrate, multitask, learn and remember things, reason and solve problems among other things.
Cognitive function is also linked to fatigue above, and we can experience cognitive fatigue if we try and carry out any of the above functions. Cognition has an impact on all aspects of our lives, so some people may have to stop working because of it.
I have a friend with MS who can no longer read a book as she can’t remember the plot and who finds it hard to follow a conversation when there are too many people. I don’t experience these problems unless I’m exhausted or have been at work all day.
Sometimes I wonder if I’d swap my physical symptoms for cognitive ones and don’t think I would. I wouldn’t be me if I couldn’t read a book or write my articles! Also, I value my career and the self-esteem my work gives me. I find a good rest helps with my cognitive fatigue and my symptoms quickly return to normal.
Bladder and Bowel Problems
This is my second worse symptom! I can’t empty my bladder properly so need to urinate frequently, and with such bad mobility issues, I find it can rule my life! I take medication for urgency as sometimes the need comes on so quickly and I can’t hold it.
Intermittent self-catheterization is used by many MSers to empty the bladder fully and avoid associated complications, but I found this difficult to get the hang of so tend to plan my life around where the nearest accessible toilet is. I also make sure I monitor how much I drink if I’m going on long journeys.
Bowel problems include incontinence and constipation and can also have a significant impact on quality of life. I manage my constipation by eating well and using a stool softener once a week, but incontinence is harder to control.
Sight Problems
Many people with MS suffer from blurred vision, eye movement issues, and optic neuritis. I’m lucky in that, so far, I’ve only experienced eye problems when I’m extremely fatigued, and symptoms tend to recover quickly. I can get blurred vision when I’m tired but don’t need to wear glasses which is an achievement in a 43-year-old!
One of my first ever symptoms was optic neuritis, and many MSers seek their first treatment because of a scary attack of this in one or both eyes. I developed it in my right eye, and I could only see straight in front of me and everywhere else was blurred and fuzzy. It occurs when the optic nerve is inflamed and can cause vision problems and even blindness. Luckily is usually gets better on its own and I had a course of steroids to help it heal.
Swallowing Difficulties
Another distressing symptom is when swallowing becomes difficult. Changes can occur subtly over a period of time and can include changes in your speech, problems chewing, food sticking in your throat or coming back up. I’ve also experienced coughing and spluttering during meals and food going down the wrong way.
It’s important to keep an eye on these symptoms and report any changes to your healthcare team as these problems can cause complications later.
Pain
Pain in MS can occur over time and is associated with stiffness or spasms in the muscles. This type of pain can be caused directly by nerve damage or indirectly due to falls, internal infection or the stresses and strains of living with MS.
I have weird “disco legs" at night sometimes where one or both legs will spasm, causing me to jolt and wake myself up. This can also occur in my arms, and it’s almost as if I can feel the nerve damage like an electric wire exposed and sparking.
I take medication for this, but it tends to knock me out and give me a dopey hangover the following day. This is a problem if I have to drive to work early so have to weigh up what’s more import, a good night’s sleep or feeling alert in the morning!
I have a prescription for codeine as I sometimes wake up in terrible pain due to not moving enough in my sleep. Also, I put stress on strange muscles groups as I don’t walk the way I was designed to and sometimes have an aching back or neck that can’t be relieved by over the counter medication. Lastly, I limit myself to once or twice a week though as I’m terrified of becoming addicted and ending up with more problems! I also feel dopey and wiped out after taking these and need to make sure I don’t have anything important to get done!
Many people swear by alternative therapies such as cannabis and research into this area is happening all the time. It’s a shame that some MSers I’ve spoken to in the UK are using cannabis illegally because it’s still not legal even for medical use here.
Numbness or Pins and Needles, and Neuropathic Pain
As well as regular normal pain, we MSers also have to endure strange sensations caused by nerve damage that are often hard to describe and explain. This can include numbness, pins, and needles or an itching sensation as if insects are crawling under the skin!
I also experience a weird, electric sensation in my legs as if I’m getting a mild electric shock. I had one patch of my stomach go numb for weeks once, and my face and jaw often go numb, causing speech and swallowing difficulties.
As with most MS symptoms, these can be worse when fatigue sets in – so regular rests and avoiding exhaustion can help.
Relapses
It’s important to remember the part relapses or flare-ups play in MS symptoms. If you have relapsing and remitting MS (RRMS), it’s likely that you’ll recover at least partly from a flare-up of a new symptom and taking steroids and resting can help speed up recovery.
Over time the nerves can become damaged and leave permanent scaring where you won’t fully recover, and there’s also the possibility of developing secondary progressive MS (SPMS) where you won’t have relapses, but progression may get steadily worse.
Whatever type of MS you have, it’s important to remember you can learn to manage new symptoms and you don’t have to suffer alone.
How to Manage New Symptoms of MS
- Know your own MS. Keep a diary of what’s normal for you and keep track of any changes.
- See your health care team regularly. Make sure you write down new symptoms and keep a list of questions to ask. How can they help if they don’t know?
- Reach out to people. Twitter and Facebook are great places to discuss symptoms, MS treatments, and solutions without leaving the couch so get online! Local support groups are also great if you prefer face-to-face contact.
- Look after yourself. Eat and sleep as well as you can. Avoid stress and get plenty of rest.
- Quit smoking. No excuses.
The key to managing symptoms is to manage fatigue, in my experience. Most new symptoms have occurred when I’ve let myself get stressed and haven’t looked after myself properly.
I had so many flare-ups when I was trying to work full-time, look after young children, maintain an active social life, be the best, sexiest wife and be an award-winning homemaker! Something had to give, and MS kept reminding my body that it was in charge and a new relapse then floored me.
As soon as I dropped my hours at work and gave myself a break, things started to stabilize and improve. Now I plan and prioritize my time, making sure I don’t overload myself with too many activities.
I also incorporate rest days into my schedule where it’s ok to sit in my pajamas for most of the day to recharge my batteries. I ask for help and delegate to other people, so things still get done without leaving me exhausted.
New symptoms can be frightening and leave you feeling isolated and alone. Reach out to other MSers, talk it through and don’t suffer in silence.