It was September 2019 when I officially heard the words from my Neurologist that I had MS but truthfully the journey to that point had started a few years before that. In those years I doubted, second guessed, got stuck in confusion, felt dismissed, wasted time and money in dead end suggestions or alternative diagnosis and at times felt that the healthcare providers that I was seeing just didn’t hear me or ‘get me’ but I knew my symptoms were persistent and that something was ‘up’. It was so frustrating! So, in the spirit of helping others, I am hoping that this article may help others out there that just don’t seem to be turning up answers to mystery ailments. Disclaimer: I am no medical professional, I am just an individual speaking from my personal experience.

I’ve come to realize that MS can often be a ‘last resort diagnosis’ which means its often done after ruling out a number of other issues such as Depression, source of pain from elsewhere such as Arthritis, ruling out Cancers and other neurological conditions. In order to receive my diagnosis, I have been through numerous blood tests, seen healthcare professionals such as podiatrists, had CT and finally MRI Brain and Spine Scans along with Lumbar Puncture. For others, it can be a quick diagnosis after a sudden and drastic change in their health – but more on that in a minute.

According to the MS Australia Website “Multiple sclerosis (MS) is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. It is characterised by sclerosis a Greek word meaning scars. These scars occur within the central nervous system and depending on where they develop, manifest into various symptoms.”  They also go on to say that MS affects more than 25,000 in Australia and more than 2 million worldwide with most people being diagnosed between 20-40 years of age. Women are three times more likely than men to be diagnosed.

There is currently no known cure for MS, however there are a number of treatment options to help manage symptoms and slow progression. But for now, let’s talk about the 10 Mystery Signs that may have bought you to this post:

1. Muscle Spasms –  this was the very first symptom for me as I had uncontrollable daily twitching in the arches of my feet which was clearly visible from the outset. The twitching was often accompanied by pain or even feelings of pins and needles. As time went on this twitching spread to other parts of my body such as my calves, hands, arms, and the side of my face. However when this symptom first started I was referred to a Podiatrist to help manage pain, but they of course could not address the root of the problem despite trying all sorts of exercises, paying for expensive orthotics and changing my shoes.
2. Clumsiness – there was a change in my gait and co-ordination which led to frequent falls, trips and accidents. This could be experienced from issues with my feet and legs, or caused by dropping things due to pain or weakness in my hands.
3. Slurred speech and trouble finding the right ‘word’. This one is maddening to me! I know exactly what I am trying to say but often times in the moment I say the wrong thing, forget the words or just plain old can’t get them out.
4. Brain Fog – Cognitive issues are a common symptom of MS. When you just can’t collect your thoughts, have trouble with memory recall and have trouble concentrating  – especially on more than one thing at a time! I have learnt that multitasking is a myth and to truly focus on one thing at a time.
5. Fatigue – I’m not talking about the type where you need a coffee pick me up – I’m talking about the bone wearing fatigue that demands that you quit everything and take yourself off to bed for a power nap. This can often be exacerbated by the heat or as a knock on effect after a busy day or two. It’s quite common for me to feel exhaustion on the Monday and Tuesday following a busy weekend.
6. Vision, Vertigo and Visual Disturbances. This often recognized as one of the first symptoms, and for me this one was occurring but it was a slow creeper and not as obvious. I have started wearing glasses, and I often get eye twitching which does cause issues in my vision in one eye. Other times I feel like there are squiggly lines in my line of sight. This can be one of the sudden onset symptoms which lead people to an emergency department as they can temporarily lose vision unexpectedly , leading to an MRI and sudden MS Diagnosis. Vertigo is often a common one, although I’ve been pretty lucky  – the worst I’ve felt is increased car sickness when others are driving.
7. Difficulty Swallowing. This one is a new symptom for me, as I’ve come to realise that I am having a few issues at dinner time – especially if I am eating a heavier carb loaded item.
8. Pain – there are as many types of pain as there are colours of the rainbow and everyone is different. It can be long lasting and permanent, or it can come and go in waves. For me it can often be sudden stabbing type pain, burning pain, the pain that feels like pins and needles, or long-lasting aching.  For me it can often be in the same places such as hands, shoulders, legs and feet but by body can decide to mix it up and throw in some pain in the most random of places at times.
9. Continence – Bladder and Bowel. As the loss of nerve signals in the brain effect the body , it can often interfere with those signals that help us know to use the bathroom and this is a common symptom for MS.
10. Trouble Walking – Muscle Weakness, Muscle Tightness, Balance and Co-ordination. Along with the spasms in the feet, this was one of my very earliest of signs. Unfortunately it’s put a bit of a restriction of my visits to the local shopping centre, but I’ve become an ace at maximizing my online shopping! These days, my high heel collection has been replaced with comfy flats and I don’t walk very far but with beginning new physiotherapy this year I am hoping to improve in this area! This is another area which can lead to a sudden diagnosis if someone was to suddenly find they lose mobility and is referred for an emergency MRI.

Did you recognize any of these mystery medical signs? I’d be really interested to hear in the comments below what you experienced if you are newly diagnosed, and especially if you are going through some of these yourself and didn’t know what it was. Of course, if you are experiencing any of these, then please visit your healthcare professional and share your concerns! I’ve had to be persistent at times, but when my symptoms weren’t subsiding and I became clearer in expressing what my concerns where,  then it became easier to get the medical attention that I needed. Knowledge is power! Melissa xx