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Does this sound like MS presentation? (bet you get these posts so often!).

Hi all, new here. I’ve been having some cognitive issues (memory loss ie asking my husband the same question over and over, thinking and generally processing more slowly, doing silly things like leaving the hob on, walking round in a daze, poor concentration etc etc), so I went to the Gp and have a neurologist appt on Tuesday. I think they are wanting to rule out dementia as my dad was diagnosed with presenile dementia in his 40s (I’m 35). However, whilst consulting Doctor Google it has suddenly clicked with me that lots of other more physical symptoms I’ve had could imply MS, they were things that I was going to get a routine Gp appt to mention (the appt to discuss the memory loss was an urgent one as things were getting out of hand). They include severe pain in my feet (it felt contractions! It’s the neearest way I can describe it, just a vice like stabbing pain across the top of my foot, both walking and at rest that came for a few seconds then went away), pain under my ankle that feels like a twisted ankle but I haven’t injured it, mild pins and needles (it doesn’t come on for no reason but pins and needles in my hand wakes me quite often (had it in my face just a few times but not for a while), and I’ve found i get it in my feet very soon after sitting down in the toilet), restless leg (I say leg because it is only ever my left side!), my hearing seems to be going (this was a problem I was really struggling with, I can’t hear my kids when we’re in the car now, I’ve given up trying to talk to them there, just tell them to repeat it when we get to our destination. Ditto when we are walking along and their faces aren’t pointed up at me). And severe muscle stiffness. It happened several times but always followed a day when I had exercised more than usual…well, I’d be exaggerating to say exercised. But walked more than usual anyway. The next day, even though it had just been fairly slow walking (days out to theme parks etc or if I had walked down the road to my coach quite fast), I found I could barely go down the stairs, it was the exact feeling I remember from when you do a really hard workout and struggle to walk the next day as your muscles are so tight. But it was definitely related to activity, it wasn’t random. Also noticed my thigh muscle twitching (the same way your eyelid does when you’re tired), a couple of episodes of dizziness (I remember telling my husband I felt like I was going to over even though I was laying down). Increasingly finding I’m stumbling over or slurring my words when I’m tiring, like ‘swans pecking’ became ‘swecking’, that kind of mistake happens every sentence or so when I’m reading to my son. I’m knackered perpetually, but I’m a mum to young kids so…! Bladder and bowel I’ve noticed no recent changes, I’ve been suffering with faecal incontinence for a while but have a feeling it’s unrelated (am seeing gastroenterologist next month) and bladder I’ve found for quite a while thst I feel the need to go but it’s only a trickle. Have some numb patches on my thigh but they’ve been there a while. No significant balance problems, I may be slightly more likely to overbalance as I step over my kids toys than my husband but it isn’t severe, likewise I’m more prone to trips and slips but not severely. No visual problems at all. So I guess what I’m asking is does this sound a familiar presentation to you or did you find that for example your tingling had no trigger or your stiffness was unrelated to activity? I do realise I sound like such a hypochondriac! Genuinely I rarely go the gp, until this year I think I’d only been a twice in the last 8yrs, for tonsillitis, but this year I’m falling apart! But now I’m starting to wonder if all these seemingly disparate symptoms are actually Ms. I’m just trying to work out how to discuss this with the neurologist so thst I feel he’s investigated thoroughly, I don’t want him getting so caught up with the idea of dementia (which I really don’t think I have) thst they don’t fully explore the other possibilities like this. I suspect they will do an mri based on what the gp has said, but I don’t know how easily diagnosed Ms is on an mri, ie would it leap out at them if that’s not what they were looking for etc etc etc. Just any advice or experiences basically! Thanks.

hello

first up, ask your GP to refer you to the bowel and bladder clinic.

you can self refer, i did.

they will do an ultrasound on your bladder to see how much it is holding.

it sounds like you are retaining which the nurses will be keen to address because it can lead to UTIs (urinary tract infections).

they are stars and work so hard to reduce your embarrassment.

they will also advise you about your faecal incontinence.

do a timeline of your symptoms, when they started, if they changed and how.

this will help your neuro.

take someone with you to the appointment because it is highly likely that you will clam up when telling the neuro.

this person can help you to remember what the neuro said to you.

the bladder nurse may be able to prescribe something to help.

stay as calm as possible and avoid stress because that just makes everything worse.

only four more gerrups until your appointment.

good luck xxx

ps let us know how you get on.

Hello CC

One thing about MS is that we all present differently. So my initial experience was likely vastly different to Caroles, even though we both have MS and were diagnosed with the same kind of MS (being relapsing remitting).

So comparing yourself with any of us isn’t necessarily helpful. However, sensory issues like numbness and pins and needles is common. As are cognitive problems, fatigue, bowel and bladder trouble (incontinence and retaining) as well as many other symptoms.

The way to approach your neurology appointment is to list your symptoms and if possible put dates to them as well as any changes. So if you had a certain symptom for a month, but then it changed or got better. Or if things have been fleeting, lasting minutes or hours rather than days or weeks.

As Carole said, take someone with you. It’s not just because you’ve had cognitive problems, it happens to everyone. We go into an appointment, talk to the doctor, think we’re following the conversation and will remember it. We then leave the room and doh, ‘what just got said?’, or ‘what did s/he say about …’, or ‘what happens next?’ The job of the companion is twofold. Both to remind you if you’ve forgotten something, and to remember what’s said. That doesn’t mean they do all the talking, you need to express what things actually feel like.

An MRI would show up signs of dementia, but it would also show up any ‘demyelinating lesions’. These are sort of scars from inflammatory episodes and could indicate MS.

Obviously you may not have dementia or MS. The neurologist wouldn’t be a very good doctor if they concentrated on one diagnosis in order to rule it in or out. The way they usually approach a new patient is to ask what’s brought you there, what symptoms you’ve had, often familial history and what previous illnesses you’ve had. They would normally then do a physical examination.

This should tell them two things, first it would show if there is a neurological problem, and second possibly give them a hint at what that problem might be.

They would then recommend a series (probably) of tests. As you are expecting, an MRI of the brain, possibly of some or all of the spine too. They could refer you to a neuropsychologist, and/or for other tests depending on what they find.

As Carole said, you should either be referred or maybe refer yourself to the bowel and bladder service. You might also have a series of blood tests or different neurological tests.

Try not to worry, that won’t help at all. Generally neurologists are used to picking through people’s history and isolating the relevant facts.

Let us know on this site if we can help at all. We’re quite good at just remotely supporting people through their diagnostic testing.

Sue

Thanks :). Wow yeah you’re right, it’s come round quick, I’ve been very lucky, now just hoping they take everything seriously. Since reading through people’s first symptoms on the sticky thread I’ve realised I had a few more things which I never equated (sensations of having a wet leg, I’m constantly checking to see if I’ve got against something wet),that kinda thing, and it turns out I was wrong and my balance is actually rubbish, it’s OK walking normally (unless it’s dark) but it turns out I can’t stand in the toe heel position at all, my son has been having lots of entertainment watching me try but I really can’t do it, and I failed that test where you stand with your eyes closed. Weird that I hadn’t even realised I was so weak in these areas! That’s really helpful advice on the list with the timings and whether stuff has just been short lived etc, thanks, I’ll make sure to do thst before Tuesday. Just nervous now that I make the most of the appointment iykwim, I’ll be gutted to walk away feeling I haven’t properly explained what is going on, and/or to be discharged without any further investigation as I’ve read some people on here say they were. Thanks again :), it’s lovely knowing there is someone listening!