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Forgot to add to my list

Hi I forgot to add that I also get the muscles in my back moving as if I am being given a massage, the first time it happened I was dropping off to sleep and felt the douvet move then felt the muscles moving after that I was driving and could feel them twitching away now my fingers are doing the same and my big toe will stick out to the side which is very painful. I think finally that’s about it then so thank you again

Hi, I’ve had a few symptoms for a couple of years, but have been ignoring them. Sudden hits of exhaustion that can last weeks or hours, but I literally drop at the point it hits, stabbing pain in my eye permanently, tremor and numbness down my left side and difficulty concentrating when these are bad. I’ve literally just gone to the doctors because others have noticed my tremors, and the pain has become permanent. He’s referred me to a neurologist, but now I’m pretty scared as admitting the symptoms has made it very real. I’ve googled everything, but nothing else comes up.

Does anyone know how this will affect me work wise or as a parent? Feeling very nervous about the future.

Hi Foxie,

To be honest, even if you had a confirmed diagnosis of MS, nobody would be able to tell you how it was going to affect you long-term.

It’s such a hugely personal and variable disease, one person’s experience may be so different to another’s that you’d barely guess they were diagnosed with the same thing.

Anyway, despite the hits on Google, there’s far from “nothing else” it could possibly be. There are at least 100 conditions that can present with similar symptoms to MS, and ALL of them have to be eliminated, before a diagnosis of MS can even be considered.

I.e. it’s not the first assumption, but what is left when every other possible explanation has been ruled out.

We can’t assume you have MS - and you shouldn’t, either. But even if we did, predictions would be pointless.

When I was diagnosed, my neuro’s attitude was to ask: “Are you a fighter, Tina?”

I honestly didn’t know - what had I ever had to fight against? So I hesitated a moment, before answering: “…yes.”

He said: “Well, you’ll be fine then!”

I’m NOT trivialising the illness, and so far, I do believe I’ve got off rather lightly (though certainly not trouble-free).

And I’m NOT pretending you can combat the disease with simple mind-over-matter (if that were the case, nobody would ever need a wheelchair except through their own fault, and I certainly don’t believe that - strong will can’t repair nerve damage).

But the point he was making was that determined people do cope, whether their illness turns out slight or serious.

It’s not a terminal illness, and most people do find ways of dealing with whatever fate throws at them.

Life might not be as you’d imagined, but it doesn’t just stop.

But even discussing this is jumping the gun, because, with a bit of luck, it won’t turn out to be MS, and - in the nicest possible way - you’ll be left kicking yourself you ever thought so!

Tina

x

Hi Foxie.

I’m in the same place as you, but one step ahead. Seen the neuro & waiting for MRI (a long wait in my area). Stay positive & don’t waste time worrying (always easier to say than do), because no one can see the future.

Paula