Questions about MS? Call us on 0808 800 8000
Man sitting in a dark room with one hand on is forehead

Living with the hidden symptoms of MS

Martin Baum

Whatever the symptom we MSers must endure - slurred speech, blindness, bladder and bowel issues - one thing we can agree is that they’re all pretty miserable.

It came from nowhere

For me, one of the most irritating hidden symptoms is one I’m still yet to discover the name of because not much is made of it.

It came from nowhere as is usual with MS symptoms. Suddenly I was jerking every which way whenever I sat or tried to lay down to sleep. It felt like my skin was being plagued by a swarm of midges, and that made me react with Parkinson's-like movements.

There was no relief. And what made it worse was that no one, including MS specialists, seemed to understand what I was going through.

The gift that kept on giving

Every time I tried to explain how it was affecting me it was being misinterpreted as pain. But there was no pain. Just as there were no answers to an irritant that had become all-consuming 24 hours a day.  

At that point I was still driving, but that too had become difficult. Any contact with my back, thigh and buttocks made any surface feel as hard as a plank of wood.

And yet this invisible MS antagonist was the gift that kept giving. Suddenly I found I was spontaneously turning into my right side when I was seated.

The upshot of this unconscious movement meant severe neck ache, as if I was sitting on the left side of a cinema or theatre.

Gabapentin and meditation

Eventually, though, my GP seemed to grasp the nettle and I was put on 3400mg of Gabapentin a day - just 200mg off the maximum allowed.  

Although the Gabaptentin has eased my discomfort, it hasn’t completely got rid of this woeful symptom. Naturally, there are some side effects to taking such a high dosage of medication. But then isn’t that true of anything of that nature?

I meditate, which helps take the edge off my twitching. But at the end of the day there’s no magic pill to make me symptom-free.

But as it is, with the absurd amount of medication I do take (no matter how unsatisfactory the effects) obviously some relief is better than none. And for that I am very grateful.

Help raise awareness of MS

This MS week we need you to help spread the word about MS. Will you help make invisible symptoms visible

Get involved with MS Awareness week, tell the world #ThisIsMS