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Original poster

Can you tell me about MS please?

42 replies

ExplodedCloud · 24/03/2017 13:36

Nobody has actually said MS to me yet but all the words they have said are pointing that way and I have MRI and neurology appointments booked.
My foot drags occasionally and I have numbness in one extremity, reflex oddities and my bladder is a bit temperamental.
I know nobody with MS. I'm late 40s with dc still at primary school. I work (desk job).
Can you tell me what life is like with MS please?

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Original poster
ExplodedCloud · 24/03/2017 19:18

A gentle bump :)

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dailyshite · 24/03/2017 19:28

I'm not an expert, my friend has it. She is similar age to you and was diagnosed about 4-5 years ago. She has bad periods but definitely more good than bad and has stayed at work, works from home when going through a bad patch.

She's just had some treatment called HSCT which sounds really exciting.

Good luck, hope you get some answers soon.

mumonashoestring · 24/03/2017 19:34

I suspect part of the lack of responses isn't down to people not caring, it's down to there being different kinds of MS, different progression rates, and people respond differently to therapies and medications so life with MS for one person can be completely different to another person's experience. For example my Mum has MS and has had relapsing-remitting for around 20 years but has now been told by her consultant that things seem to have plateaued.

Original poster
ExplodedCloud · 24/03/2017 19:52

Thanks both. I wasn't thinking people don't care :) just aware how things drift off the radar easily.
I have anxiety and am trying to get some perspective so it helps to hear of people being OK 20 years post diagnosis. And of more good than bad patches. My initial reaction was to be worried silly but I'm trying to get a feel for what it could mean. DH and my parents are all 'Of course it isn't MS!'

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BackforGood · 24/03/2017 19:55

I agree with Mumonashoestring - it is difficult to be able to guage, as an be so different for different people. Some - sadly, you don't want to know, but for others, it is something that is certainly livable with for decades without too much adjustment. It really is a broad spectrum. Good luck to you Flowers

Ginmakesitallok · 24/03/2017 19:56

My mum was diagnosed over 10 years ago. She generally gets on fine. I remember the fear when she was diagnosed- I thought she'd be in a wheelchair etc - but she still lives on her own, works part time, drives (an automatic ) and does everything she used to. She gets tired easily, takes pain meds etc, but it's nowhere near as bad as we thought it would be.

Original poster
ExplodedCloud · 24/03/2017 20:52

Thanks and yes I see that not knowing what type etc makes it impossible to tell. A lot of the adjustments like an auto are pretty straightforward I guess.

I only ever knew one person whose DH had it 30 years ago and his was very advanced. I never met him.

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Hubblebubble64 · 24/03/2017 21:06

Hi, I have ms 29 years and I am still working full time, raising a family and getting on with life. I suffer with severe fatigue some days, spasms and quite severe pain but I have medications to help. I have various annoying symptoms like pins and needles numbness sensations of hot and cold spots on my body.

Ms is not the end of the world, if you get a diagnosis remember you have already being living with it for quite a while.

Pm me if you want to ask any questions

Original poster
ExplodedCloud · 24/03/2017 21:14

Hubble glad you're doing well and that is a good way of approaching diagnosis which makes sense.
I may well PM you, thank you. Possibly over the weekend.

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Falconhoof1 · 25/03/2017 14:19

Hi! I have MS. Diagnosed 22 years ago and have relapsing/remitting type. I'm 46 now and still mobile and well. Tiredness is currently my biggest issue as i can't do much without feeling wiped. I also had waking problems for a short while but recovered at a few months and, although i have reduced sensation in my feet I'm doing ok. I know i am very fortunate in the progression. It can be a very different disease for others. Best wishes to you as i know it's all very scary.

Falconhoof1 · 25/03/2017 14:20

Walking not waking!

Original poster
ExplodedCloud · 25/03/2017 15:33

Thank you Falcon. I'm trying to be rational but yes it's scary. I hope you stay mobile for a good bit longer.

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MSLehrerin · 21/04/2017 22:21

I've had it for about 25 years and am doing ok. Severe fatigue at times and difficulties walking - was RR but neuro and I both thinking SPMS now. The label of what type doesn't really matter tbh, it's still the same stuff we deal with day in day out. I've never taken any DMDs, only Baclofen for muscle stiffness in my legs. I use a stick or crutch when necessary but not all the time. I work full time. MS is a right royal pain in the backside at times but it's definitely not the scenario I had talked myself into at diagnosis 😃 send me a PM if you want to chat further.

BadCarrot · 22/04/2017 11:44

I was diagnosed at 42 - 12 years ago. Haven't taken any DMDs and didn't have any major problems just occasional periods of numbness/ l'hermitee and fatigue.

Over the last 12 months I've developed a dropped foot and the fatigue is getting worse - saw the Consultant again (after 12 years!) and he said it's common that it changes in middle age - getting either worse or better.

I know quite a few people with MS and it's been very different for all of us - The MS Society website has some great information and helpful forums. PM if you want someone to chat to. Flowers

TheStick · 26/04/2017 10:46

Im glad i stumbled across this as i think i might be diagnosed but as yet no one has mentioned MS so far. Last month i was taking spasms and going numb down one side of my body, i went to the gp who sent me to the hospital as they though i was taking mini strokes. Anyway, i had a mri scan which showed unexplained white dots/spots so then had a lumbar puncture and went home. Ive not heard anything since but ive been referred and got a neurologist apt on 26th may. I have alot of ms symptoms so im guessing thats what they'll tell me....no idea though, the not knowing is horrible though.

nevertoooldforindie · 27/04/2017 08:11

joining the thread I'm waiting for a neurology appointment following GP visit with numbness in left side of face and leg. I'm absolutely terrified. I've found the comments very helpful trying to keep positive but the anxiety of the waiting is really getting me .

TheStick · 27/04/2017 19:12

The waiting is getting to me too, i just realised that i wrote that my appointment was 26th may, its 16th ! One good thing for me is that we're going on holiday on saturday for 2 weeks so this should keep me distracted until my appointment. Im at the stage where i dont care what i have (in a way), i just want to know either way.

GreenShadow · 27/04/2017 22:33

Hi. Me too Stick and Indie!
Also awaiting a neurology appointment for pins and needles on one leg.
I'm actually a bit old to start MS (55) so have been playing it down a bit in my mind, but then last week I woke up to find I'd wet the bed. Never, ever done that before. Not encouraging is it.

Hushabyelullaby · 27/04/2017 23:32

I have MS and also used to deliver training on it (so have some idea from both points of view). MS is different for every person affected by it, and personally I found that just after I had been diagnosed every other person would tell me about someone they know with it and then reel off ways in which they are affected. It's so important to not listen to stories about other people and relate that to yourself, for factual, accurate info, The MS Society are a fantastic resource. No two people are affected in the same way, so you really can't look at someone and say 'that's what it's going to be like'.

I found the fact that MS is so uncertain/unpredictable pretty hard to get my head round for a while. I found that talking with other people also affected by it really helped me, although that's not for everyone.

I was diagnosed at 29 (am now 41), with aggressive RR (Relapsing/Remitting) MS, and I still live a full, active life. I am however a wheelchair user, but this is NOT due to the MS. I had an accident where I ended up in a wheelchair temporarily, but whilst was off my feet for 12 weeks the MS 'got' me. So, to look at me I'm a stereotype - MS and wheelchair user, but in actual fact the MS isn't what put me in the chair, but ultimately it's what's kept me in it.

I had chemo treatment Alemtuzumab (Lemtrada), in 2008, and I was given another MRI scan last year and the results show that my MS has not progressed or relapsed since then. I went from relapsing every month, to nothing for 9 years!

If it does turn out to be MS, there are so many new and hopeful treatments out there.

If you want to PM me, I'll gladly chat with you.

Original poster
ExplodedCloud · 27/04/2017 23:37

Oh my goodness I hadn't seen all these new replies Blush
Let me have a read...

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Original poster
ExplodedCloud · 27/04/2017 23:42

MSLehrerin Sorry to hear that it's gone progressive but you sound like you've managed well for a long time.

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Original poster
ExplodedCloud · 27/04/2017 23:46

BadCarrot interesting that you were diagnosed after 40. I was very worried about that meaning it might be Primary Progressive. My foot drops occasionally I think - my toe suddenly drags along the floor and I attempt to trip myself up - but I've had a good few weeks with it.

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Original poster
ExplodedCloud · 27/04/2017 23:58

stick, indie & Green we can hold each other's tingly hands!
My first MRI has shown some spinal cord damage so the neurologist has given me a provisional diagnosis that isn't MS but I have to have a head MRI to see if it is MS Confused. But if it is MS he thinks it is RR. So I think it's positive. But I am now freaking out every time something feels tingly.
Frustratingly nobody is in the least bit bothered about trying something to sort out the original symptom I went to the GP with which hasn't resolved (and doesn't fit with it not being MS) so I hope if I am diagnosed they'll try some steroids on it.

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Original poster
ExplodedCloud · 28/04/2017 00:04

Hushabyelullaby that's very unlucky that you got pushed into a wheelchair :( but good news that you're stable in terms of remission. I have looked at the MS Society site and I agree that it's useful and comprehensive. I had gathered from there that the active interventions and research seems to be focused on RR MS so I am encouraged.

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TheClaws · 28/04/2017 04:35

I'm glad to hear your first news has been relatively positive! Even if it does turn out to be a form of MS, the pattern of the disease is different for every person. It is difficult - and probably flawed - to compare yourself to another as it is unlikely you'll follow the same pattern. Even googling isn't a good idea as you'll read about symptoms you may never encounter, and cause yourself worry you didn't need.

I was diagnosed 21 years ago and am 45 now. I am still walking OK though I do fatigue easily. The last couple of years have been fairly good for me as I'm on a fantastic drug (Tysabri) that has kept me relapse-free. New medications are coming out all the time as research is well funded. So even if you do - if you start on one of those medications, you could prevent a lot of damage occurring and live life relatively trouble-free. Good luck!