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A few questions pls xx

Hi guys and girls. So, Firstly I’d like to say what a fantastic website this is. And full of such lovely people. So a bit of background, my gorgeous dad has ms and has had since he was 26/27…he is the most amazing man in the world. And I’ve learned so much about ms through him and this website. The reason I am here with you all this evening is that lately I have been having a few little niggles with my health ( nothing compared to u all I know) but still enough to make a few alarm bells ring. For the last 2 weeks my left eye lid has been going nuts…twitching! Driving me loopy…and yesterday I went to pick up the kettle and it felt heavier than usual. My partner said to me that I’m hypersensitive due to my father’s illness and that he thinks I’m being silly. But lately my little fingers have been going freezing cold not numb by any means but cold…(and I have the heating on) also I have had persistent thrush (candida) that I can’t shift (yuk) (sorry about that, grab the sick bucket) and also a couple of weeks ago one evening I literally went to the toilet for a wee 20 times in 2 hours and only sipping juice. But anyways I am a wee bit concerned. I know if u catch things early it can help loads. But was wondering what your first symptoms were (I know they differ for everyone) my dad’s were urinating a lot and also he kept falling over for no reason and walking as tho he were drunk. And also whether or not this warrants a doctors trip or any concern…I feel the doctors don’t listen as I had an episode a couple.of years back where I couldn’t grab a knife properly when cutting just couldn’t do it felt weird in my hand…strange I know but there it is. I got sent to see someone who.tested my reflexes etc which were fine. Bit they never did a mri etc… Pls fill me in…if ur all still awake after reading this. Much love Gem x

Well of course you’re likely to be hypersensitive due to your father’s illness - who wouldn’t be? That’s not silly: that’s normal.

As I am sure you know, the risk of having MS is very low, even when one has a parent with MS. MS is not a common condition. Things like cystitis, thrush etc are, of course, very common conditions indeed. In general, common conditions are more common than rare ones!

However, I would be inclined to talk to your GP again to fill him/her in on the symptoms that are troubling you. If you are worried that you might have MS like your dad, and you have new symptoms that concern you the way your problems a couple of years ago did, then tell the GP. Let the GP take a view on what to do next - that’s what they’re for. Don’t feel embarrassed.

Alison

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Gem,

I totally agree with Alison. Your “niggles” could be one of a zillion things but asking your GP to help you identify what might be going on is completely reasonable. Never feel embarrassed (easier said than done) Think of it as helping to focus NHS resources. Doubtless you & your dad have contributed into the system so when you need a bit of support go for it. It is very powerful to be reassured that a “niggle” is not to be worried about and it is useful and prudent to get early help and plans if a “niggle” is indicative of a bigger problem.

Good luck and all the best to you and your family.

Mick

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Well just had some devastating news. My father’s brother has just been diagnosed too. I’m petrified s I have 2 beautiful sons myself. Slightly thought it was rare that family members get it. Seems to be more hereditary than people think. Xx

hi gem

sorry to hear that your uncle has ms.

you need to calm yourself down, see your gp for reassurance and get on with your life.

your beautiful sons will help take your mind off things.

if it turns out that you have ms, it doesnt mean that you’ll die! (everybody does that and we’re special).

you will find your way through it.

remember to smile because if not used often enough the smile muscles get stiff!

i noticed a while ago that when in repose, my face looks miserable so i’ve been practising smiling.

now i look ike a nutter!

carole xx

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What rotten news for you - I am so sorry.

Hang on to the fact that most - overwhelmingly most - children in families where MS has reared its ugly head do not get MS themselves.

Alison

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Hahahaha fantastic. That has cheered me up (big grins) I’m getting sent for a emg??? Is that right. Although this can’t diagnose ms I don’t actually know why the doctor is sending me for this. Xxc

Soooooooo…still having tingling in hands and feet…and they are awfully cold. Had a Brain mri yesterday and the radiologist said he didn’t think there was anything suspicious apart from something to do with my sinuses which is good right??? Is it likely I have some one my spine and now my brain…would u think.it’s advisable to have a spine mri too? X

hi again gemma

i’m glad that my looking like a nutter cheered you up.

i get to see it every morning!

electromyography (i had to google although i had one in 2008) records the electrical signals produced by your muscles.

so it’s good that the radiographer has suggested this rather than just saying goodbye.

as for a spinal MRI, the radiographer will pass your brain mri to your neurologist who will decide on the next steps.

if it is suggested for you, you should go along with it.

the radiographer didnt see anything suspicious which probably means no lesions.

anyway you will be having the ECG and then seeing your neuro.

so keep on practising your smiles!

carole xx

Hi carole. Thanks for responding…well I never seen a neurologist I got a referral from doc and paid private. Getting a emg soon hopefully so that’s a good thing I guess. Is it rare to only have lesions on spine? Hopefully the doc will stop being a pain and actually pay for this mri. We are skint lol. Yes always smiling xxx

Hiya…just to say…clear brain mri…and they never done a emg they only done the nerve conduction test…thing is my eye twitch is getting worse and my eyelid is getting sorta jammed…apart from that no pins and needles and the twitching has calmed down in my body, which is amazing news…dunno what the hell is go on with my twitchy eye mind…should.I push for a spine mri…or just leave it now? Xxx

Hi,

A spinal cord lesion couldn’t possible cause a twitchy eye - spinal cord lesions only cause symptoms from the site of the lesion downwards, never upwards.

So if you had a clear brain MRI, my honest advice is leave it, for now. If you did have an undetected spinal lesion, it still can’t explain the symptoms you are having.

What’s more, brain lesions in MS are both more common and easier to spot than spinal cord lesions - that’s why they almost always start looking in the brain, not the spine, as it’s a much more fruitful hunting ground.

Of course, I had to do everything arse about face - almost literally - and have a spinal scan first, right down to the pelvis. That was because my presenting symptoms were entirely consistent with a slipped disc, so nobody was talking MS…at that stage.

But barring any red herrings like that, the usual procedure is to start with brain first. Whilst not impossible, it is pretty rare for MS to involve spinal lesions ONLY, so a clear brain MRI is usually pretty conclusive. There are some other quite rare diseases that may or may not be part of the MS spectrum, that disproportionately attack spine, rather than brain - but if you had one of those, it still wouldn’t explain the twitchy eye!

I think there’s little mileage in pressing for a spinal MRI, when you’ve already had a clear brain one. Obviously, if there were any dramatic new developments, you should report them, as it may cast new light on things. But otherwise, I think you should try to take it as positive that, so far, there is no evidence in support of your worst fears, and take a step back from it now. I’m sure you’ll already have been told to get in touch again if anything else happens, but for the time being, I think that’s the end of it. Nothing can be diagnosed without more evidence than this, and that’s unlikely to be forthcoming unless you develop new symptoms - in which case re-scanning may reveal something.

Tina