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Unusual symptoms: cog-fog and sensitised skin

Jenny Clarkson

My MS is pretty obvious. I have to use crutches for walking around the house and a mobility scooter or wheelchair when outside. My stiff legs and stumbles are easy for everyone to see! 

My brain is in a fog

Despite this, many of my other MS symptoms are completely invisible. I find that I often forget words, making my children feel confused and frustrated as I insist, ‘you know…the… thingamajig’. 

Sometimes, I’ll be in the middle of telling a story and then completely lose my train of thought. Or, I'll be in the middle of making dinner, and I’ll go to a cupboard and completely forget what it was I went there for.

Dealing with invisible MS symptoms

There’s no doubt that these hidden invisible symptoms can be very frustrating, for myself as well as for others. Although they can’t be seen, the effects are noticeable to others. They usually happen when I’m particularly fatigued, but they can also occur out of nowhere, for no rhyme or reason.

Over time, I’ve found little ‘hacks’ to help me. For example, picturing the item in my head can sometimes help me remember a word. Or I’ll describe it instead, ‘you know, that thing that we write with’.

Lhermitte's sign and other sensory symptoms 

I’ve also had sensory symptoms that are truly invisible, in that other people can’t notice them at all. My mum said that when I was young – pre MS diagnosis - I used to have the feeling of water dripping down my back when nothing was there. I get Lhermitte's sign, which is an electric shock feeling running down my back and arms when I tilt my head forward. I also get it, bizarrely, when I’m going for a wee!

My body tells me that I’m especially rundown when I get what I call ‘sensitised skin’ on my face and arms. It’s almost as if I’ve been burnt and the skin hurts to touch.

I know that MS can be considered a ‘snowflake disease’ in that no two people with MS are exactly the same. However, I often wonder whether others feel these same sensations?  Although my physical difficulties are the most obvious of my MS symptoms, these invisible ones are just as frustrating, and can be so difficult for others to understand.