Questions about MS? Call us on 0808 800 8000
Footprints on a sandy beach

Unusual symptoms: is it MS or not?

Sarah Rees

One of the (many!) challenges of having an unpredictable and unique condition like MS is you can never be quite sure if a symptom is related to your MS or something else entirely.

In the first few years after diagnosis, this makes you hyper-aware of everything that happens in your body. “I didn’t sleep well, is that MS? I need the toilet more frequently, is that MS?” Often the answer is no!

The self-diagnosis is made more complicated by the fact that some MS symptoms are less typical, so you may not have been told to expect them. Fortunately, excellent websites like that of the MS Society provide thorough information about the various symptoms, even those lesser spotted ones.

I’ve had a couple of these ‘rarer’ symptoms of MS. Even when I was being diagnosed, I was seen as a bit of an outlier because I had no issues with my vision and my Vitamin D levels were cheerily high.

Foot drop and the MS hug

One of the less typical symptoms that I had instead was foot drop. My balance had gone haywire and I started to experience weakness down the left side of my body. When walking, I had to drag my left foot along behind me as it didn’t seem to want to get involved. It was like the grumpy teenager – do we have to go for a walk? I used to have to make a conscious effort to hoist the whole left leg up a bit to avoid tripping over.

Another unusual symptom that I picked up more recently was the MS hug. This feels like you’re being squeezed around your body – a tight hug – and the location of the squeeze depends on where the inflammation is in your spine. My ‘hug’ happens below my ribs, which makes it hard to take a full, deep breath.

Managing unusual MS symptoms

When I start to feel either of these symptoms – along with my portfolio of other things – I know I’m getting tired and need to slow down. If I walk too far one day, my left leg starts to get a bit stiff and I limp. I’ve named it my ‘peg leg’ as it can feel like a lump of wood I’m dragging along beside me.

A stick or a supportive arm are usually all I need to get myself to my sofa. Some days I wake up feeling a bit ‘hugged’, so I test it with a few deep breaths. If it feels like hard work, I know that I need to have a slower day.  

Some symptoms aren’t MS

Have you had either of these symptoms? And how do you experience them? It can be quite isolating when these symptoms suddenly flare up and slow us down – even more so when they are less typical symptoms.

But remember that you’re not alone. There are many out there who have these rarer symptoms and I’m sending positive thoughts into the ether for all of you!

Finally, remember to always go and get checked out with your doctor if a new symptom appears that could not be MS. Some things aren’t related. And, even better, there might be a way to fix it!