Bringing it over here because we discovered several of us on the same thread have this horrible condition and we don’t want to be whiny little witches and derail the thread.
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The thread title was supposed to be “for people who can’t walk in a straight line” - but “for people who can’t” also works. 
I was diagnosed very late and only when a locum GP took my ducked eyes seriously - the GP the week previous had told me to shake my head side to side - what am I? A bleeping googly-eyed doll?
Anyway - I live quite a controlled life and do my best not to over-do it.
For me I suppose one of the biggest struggles is not knowing if tomorrow will be the day I wake up blind/can’t walk - and then there’s a knock-on from that. I won’t take a car on finance/contract because it scares the bejesus that I could lose my license “tomorrow” and be stuck paying something for years.
As it is I’ve had huge battles with the DVLA just to hang on to my license.
There’s no simple box for “I *did* have diplopia but I’m ok now”.
I carry a torch in my handbag because I’m totally blind in the dark.
I’m on Tecfidera which makes me glow like a tomato and my nose drip - sexy as hell - but I’ve not relapsed since I’ve been on it so I’ll stick with it.
I struggle a lot with facial pain - especially around my teeth and eye sockets. Feels like being whacked in the face with a hammer and having half your teeth broken in half.
I was diagnosed very late and only when a locum GP took my ducked eyes seriously - the GP the week previous had told me to shake my head side to side - what am I? A bleeping googly-eyed doll?
Anyway - I live quite a controlled life and do my best not to over-do it.
For me I suppose one of the biggest struggles is not knowing if tomorrow will be the day I wake up blind/can’t walk - and then there’s a knock-on from that. I won’t take a car on finance/contract because it scares the bejesus that I could lose my license “tomorrow” and be stuck paying something for years.
As it is I’ve had huge battles with the DVLA just to hang on to my license.
There’s no simple box for “I *did* have diplopia but I’m ok now”.I carry a torch in my handbag because I’m totally blind in the dark.
I’m on Tecfidera which makes me glow like a tomato and my nose drip - sexy as hell - but I’ve not relapsed since I’ve been on it so I’ll stick with it.
I struggle a lot with facial pain - especially around my teeth and eye sockets. Feels like being whacked in the face with a hammer and having half your teeth broken in half.
I just saw this on the MN thread, and waddled over.
Thanks @50degreesnorth
I was dx in 2010 during a fucker of a relapse. Luckily my GP was pretty on the ball, and after looking at a few other things, had me referred to neurology after a few weeks. I am on Tecfidera too, and *touch wood* have had no real issues since I started it.
I need to go to work now, but will be back for the chats later.
Thanks @50degreesnorth
I was dx in 2010 during a fucker of a relapse. Luckily my GP was pretty on the ball, and after looking at a few other things, had me referred to neurology after a few weeks. I am on Tecfidera too, and *touch wood* have had no real issues since I started it.
I need to go to work now, but will be back for the chats later.
Hello my darlings. I hope the heat isn’t sending symptoms too wild!
I kind of love the typo in the thread title, ‘for people who camt’. It made me laugh, as it kind of reflects when it’s just too much. When you can’t even, you camt!
We do our best, though!
I kind of love the typo in the thread title, ‘for people who camt’. It made me laugh, as it kind of reflects when it’s just too much. When you can’t even, you camt!
We do our best, though!Yay! Thanks @50degreesnorth
4 weeks into a relapse now. Went a bit psycho on the 500mg of pred for 5 days then felt better but seem to be regressing again.
I need to get back to work! I’m supposed to be on a plane to Zante 4 weeks today! MS can piss off!
DX at 36, had Lemtrada x 3 in 2009, 2010 and 2011. No relapses for 11 years until now. I know, I’ve been lucky.
Had a mri yesterday, see what the results bring. Hopefully get me on something else and I can stop being a whiny witch.
4 weeks into a relapse now. Went a bit psycho on the 500mg of pred for 5 days then felt better but seem to be regressing again.
I need to get back to work! I’m supposed to be on a plane to Zante 4 weeks today! MS can piss off!
DX at 36, had Lemtrada x 3 in 2009, 2010 and 2011. No relapses for 11 years until now. I know, I’ve been lucky.
Had a mri yesterday, see what the results bring. Hopefully get me on something else and I can stop being a whiny witch.
I do love the “speedy” feeling from pred - less keen on the big moon face and rapid weight gain.
Make sure you use the assisted travel service @Rambler20 and have a super time sitting on a lounger sipping cocktails. It’s hard to fall off a sun lounger.
I was really reluctant to use the assisted travel thing and I said no to the wheelchair and said “no, I don’t need that - I just need to sit down sometimes” and she started giggling and said “so… something like a wheelchair then?”.
Well… when you put it like that.
Make sure you use the assisted travel service @Rambler20 and have a super time sitting on a lounger sipping cocktails. It’s hard to fall off a sun lounger.
I was really reluctant to use the assisted travel thing and I said no to the wheelchair and said “no, I don’t need that - I just need to sit down sometimes” and she started giggling and said “so… something like a wheelchair then?”.
Well… when you put it like that.
Hi, I also have MS. I was diagnosed in 2016 after I got even more fatigued than usual, was very dizzy and my eyes kept twitching. I went to GP and was referred to Hospital but DR there said it was a virus. Then a week later I went back to GP who was different to 1st 1, but also sent me to hospital. And there they took me in and did some tests to rule things out but after the MRI, the neurology team took over. I also have T1D (diagnosed 1997). I was in for couple weeks and got steroids. I didn't feel better. Then couple months later I got another MRI and there were more lesions and so they diagnosed me.
At 1st I was on Plegridy which was OK but did give me flu like symptoms each time I took it. Then I was on Tysabri which was Ok but I hated being so fatigued that it was such a struggle to get to the hospital to get the infusion. So now I'm on Kespimta which is going well. I'm still extremely fatigued and still dizzy.
I've always been fatigued since I was about 18 and got very sick which I was told was a virus but now suspect it was MS too.
The heat definitely doesn't help things.
At 1st I was on Plegridy which was OK but did give me flu like symptoms each time I took it. Then I was on Tysabri which was Ok but I hated being so fatigued that it was such a struggle to get to the hospital to get the infusion. So now I'm on Kespimta which is going well. I'm still extremely fatigued and still dizzy.
I've always been fatigued since I was about 18 and got very sick which I was told was a virus but now suspect it was MS too.
The heat definitely doesn't help things.
Hi @Keikochan I’d like to say it’s lovely to have you here but… 
Well done for collecting a small handful of autoimmune issues - my mum was type I and my maternal grandmother had a wonky immune system - thankfully I didn’t have daughters!
The fatigue is killing. I’ve previously described it as hitting so hard and fast that I could literally lie down in the middle of Tesco and just not give a damn. The first time I had that was age 18 when I had some virus and lay down in the chemist. I don’t know if that triggered it all.
I had a terrible time with the vertigo/dizziness and was shuffling around like a drunk crab. The MS Society funded a local neuro physio and she put me right within a month.
Someone asked the other day about the exercises and it was a few years ago so I will have forgotten some but I’ll try.
First step is to “box yourself in” so you don’t hit the floor. So for me that’s between dining table, wall and door - and I put a chair on the fourth “side”. Means if you wobble you’ve got something to grab in all directions.
Then you do things like:-
1. Place one foot directly in front of the other bearing weight on both - try to do this for a minute each way
2. Balance on one foot for a minute. I have one side better than the other.
3. Balance on one foot and close your eyes
4. Balance on one foot and move your head side to side (that’s bleeping hard!)
She also put me on to an app called “clock yourself” where basically it shows the time and you need to move your foot to that position.
It worked like witchcraft and like I say - back to walking reasonably within a month.
Also - if you’re struggling with dizziness make sure you’ve got grab rails all over the bathroom and the stairs - the council can help with that.
Well done for collecting a small handful of autoimmune issues - my mum was type I and my maternal grandmother had a wonky immune system - thankfully I didn’t have daughters!
The fatigue is killing. I’ve previously described it as hitting so hard and fast that I could literally lie down in the middle of Tesco and just not give a damn. The first time I had that was age 18 when I had some virus and lay down in the chemist. I don’t know if that triggered it all.
I had a terrible time with the vertigo/dizziness and was shuffling around like a drunk crab. The MS Society funded a local neuro physio and she put me right within a month.
Someone asked the other day about the exercises and it was a few years ago so I will have forgotten some but I’ll try.
First step is to “box yourself in” so you don’t hit the floor. So for me that’s between dining table, wall and door - and I put a chair on the fourth “side”. Means if you wobble you’ve got something to grab in all directions.
Then you do things like:-
1. Place one foot directly in front of the other bearing weight on both - try to do this for a minute each way
2. Balance on one foot for a minute. I have one side better than the other.
3. Balance on one foot and close your eyes
4. Balance on one foot and move your head side to side (that’s bleeping hard!)
She also put me on to an app called “clock yourself” where basically it shows the time and you need to move your foot to that position.
It worked like witchcraft and like I say - back to walking reasonably within a month.
Also - if you’re struggling with dizziness make sure you’ve got grab rails all over the bathroom and the stairs - the council can help with that.
Hi @Keikochan I’d like to say it’s lovely to have you here but…
Well done for collecting a small handful of autoimmune issues - my mum was type I and my maternal grandmother had a wonky immune system - thankfully I didn’t have daughters!
The fatigue is killing. I’ve previously described it as hitting so hard and fast that I could literally lie down in the middle of Tesco and just not give a damn. The first time I had that was age 18 when I had some virus and lay down in the chemist. I don’t know if that triggered it all.
I had a terrible time with the vertigo/dizziness and was shuffling around like a drunk crab. The MS Society funded a local neuro physio and she put me right within a month.
Someone asked the other day about the exercises and it was a few years ago so I will have forgotten some but I’ll try.
First step is to “box yourself in” so you don’t hit the floor. So for me that’s between dining table, wall and door - and I put a chair on the fourth “side”. Means if you wobble you’ve got something to grab in all directions.
Then you do things like:-
1. Place one foot directly in front of the other bearing weight on both - try to do this for a minute each way
2. Balance on one foot for a minute. I have one side better than the other.
3. Balance on one foot and close your eyes
4. Balance on one foot and move your head side to side (that’s bleeping hard!)
She also put me on to an app called “clock yourself” where basically it shows the time and you need to move your foot to that position.
It worked like witchcraft and like I say - back to walking reasonably within a month.
Also - if you’re struggling with dizziness make sure you’ve got grab rails all over the bathroom and the stairs - the council can help with that.
Thanks. My husband and I joke that I'm the cash cow of the Pharmacy and GP. Yeah I describe the fatigue as crushing bc it's just so hard to move when it gets really bad.
Thanks, I'll give those a go. Unfortunately at the moment, I have a thing called Charcot foot and so I'm in a cast and can't put any weight on my feet. It's a nerve damage thing from T1D. But hopefully I'll be back walking soon.
Yes, grab rails in bathroom are def a must!
Morning all. I feel like my ass is being kicked by the lovely weather. Very tired this week.
Not fatigue though, similar to your descriptions above. I am not *there* yet. Trying to rest up as much as I can in the [possibly fruitless] attempt to feel better before it gets worse.
I have always described fatigue as the energy just draining away and if a bus was hurtling towards me, I wouldn't be able to move out of the way.
The heat used to really impact me, I was dx at this time of year and the 2nd big relapse I had was end of May 2014. Both times I ended up in hospital on steroids. But also, both times I was unmedicated, and since 2014 I haven't needed to be admitted.
I had a few more years after that where the heat really flared up symptoms and I just slept and slept, but it hasn't been as bad in the last 6/7 years.
I realise I am very lucky, my progression has been slow and I don't have too much hassle. It really is luck/randomness of lesions/meds working well that has got me here.
Hope everyone feels a bit better today. It's not as hot here today
Not fatigue though, similar to your descriptions above. I am not *there* yet. Trying to rest up as much as I can in the [possibly fruitless] attempt to feel better before it gets worse.
I have always described fatigue as the energy just draining away and if a bus was hurtling towards me, I wouldn't be able to move out of the way.
The heat used to really impact me, I was dx at this time of year and the 2nd big relapse I had was end of May 2014. Both times I ended up in hospital on steroids. But also, both times I was unmedicated, and since 2014 I haven't needed to be admitted.
I had a few more years after that where the heat really flared up symptoms and I just slept and slept, but it hasn't been as bad in the last 6/7 years.
I realise I am very lucky, my progression has been slow and I don't have too much hassle. It really is luck/randomness of lesions/meds working well that has got me here.
Hope everyone feels a bit better today. It's not as hot here today
A wee moan and I think most of you would get this. bleeping packets. Opening those guys is like something from the Krypton Factor. I use scissors to open everything- “easy tear” my a. I was on the brink of leaving a review for my subscription coffee to say the best thing about them is that they have the only food packaging I’ve ever encountered where the “tear across the perforated” line actually works. But realised that would expose my incompetence to the world.
These stupid new bottle caps are virtually impossible on the days my fingers just won’t work the way they’re supposed to.
These stupid new bottle caps are virtually impossible on the days my fingers just won’t work the way they’re supposed to.
MSer reporting for duty here too. RRMS, diagnosed right in the worst of the pandemic and started on tecfidera a year later, but clearly had it since at least a decade earlier but not diagnosed.
Mostly I'm ok and dealing with it. Very happy to have been out of the UK for the past week on holiday in a cooler climate.
Love, solidarity and weird twitches to you all, fellow travellers.
Mostly I'm ok and dealing with it. Very happy to have been out of the UK for the past week on holiday in a cooler climate.
Love, solidarity and weird twitches to you all, fellow travellers.
Ugh the pandemic years - I was being investigated right before it all kicked off and had been to see a private neurologist who then plugged me back into the NHS.
Then radio silence.
It was only in 2023 I suffered a major relapse and was diagnosed.
However, *last* year the consultant let it slip I’d actually been diagnosed in 2020.
So had they actually y’know told me back then, I’d have been on DMTs and not suffered a devastating relapse.
I’d also been investigated in 2014 when I went numb toes to sternum- but obviously the diagnosis was large, middle-aged woman.
I always used to put the body weirdness down to too much coffee/cigarettes/not enough sleep but here we are.
It seems diagnosis has improved though - I live in a village with fewer than 100 people and 3 of us were formally diagnosed within a few months of each other which was a bit weird.
I feel embarrassed sometimes with the changes I’ve had to make. Eg I got a new bathroom last year and I had to ask them to put all my grab rails up - y’know - not legacy from the previous people - but for me who falls over when she shampoos her hair.
Then radio silence.
It was only in 2023 I suffered a major relapse and was diagnosed.
However, *last* year the consultant let it slip I’d actually been diagnosed in 2020.
So had they actually y’know told me back then, I’d have been on DMTs and not suffered a devastating relapse.I’d also been investigated in 2014 when I went numb toes to sternum- but obviously the diagnosis was large, middle-aged woman.
I always used to put the body weirdness down to too much coffee/cigarettes/not enough sleep but here we are.
It seems diagnosis has improved though - I live in a village with fewer than 100 people and 3 of us were formally diagnosed within a few months of each other which was a bit weird.
I feel embarrassed sometimes with the changes I’ve had to make. Eg I got a new bathroom last year and I had to ask them to put all my grab rails up - y’know - not legacy from the previous people - but for me who falls over when she shampoos her hair.
Mistake on my earlier post, I’d not had a relapse for 15 years, not 11.
Hoping to convince work occupational health this week, that while I’m still in relapse as far as I’m concerned it’s ok for me to go back as I’m used to it now.
@50degreesnorth - who would I contact at my council re grab rails? Adult Social services?
I’m also thinking, if this drags on I may consider a PIP claim, I’m prepared for it to drag on. I’ve spent a lot this last month on various aids to get me around.
Hoping to convince work occupational health this week, that while I’m still in relapse as far as I’m concerned it’s ok for me to go back as I’m used to it now.
@50degreesnorth - who would I contact at my council re grab rails? Adult Social services?
I’m also thinking, if this drags on I may consider a PIP claim, I’m prepared for it to drag on. I’ve spent a lot this last month on various aids to get me around.
I assumed my first major relapse was RSI - my right hand just... stopped working. Never went to the doctor, switched to using my mouse with my left hand and effectively rehabbed myself - I played keyboards in a band and had a few gigs booked so I had to keep my fingers moving and build the movement and strength back. It's not the same though, and i don't do paid work any more. Also, that hand is weirdly cold all the time?
@Rambler20 At mine it’s OT (same people who assess for blue badge) - but I realise not all councils will operate in the same manner. Adult social services should definitely be able to point you in the right direction.
Morning all, I just spotted this thread so wanted to come and say hello! I was diagnosed with RRMS in 2019 after over a year of symptoms and tests, and *touch wood* haven't had any relapses since, although I've come very close to it, especially when my son was a newborn. I'm very fortunate that mostly my MS is inconvenient and uncomfortable rather than debilitating, but I've been struggling more with symptom flare ups over the last couple of months thanks to stress and the heat, so there's always the worry at the back of my mind that I'm not too far away from a relapse. Sending lots of love to everyone coping with MS, especially in the recent heat - hopefully now it's cooler we'll all feel a bit better 
Hello @Pontiac_Bandit.
my typing is awful today, so I’m trying out type in by speech.
Talking of speech, my speech is getting slurred at times especially yesterday because I had an hours phone call with Work occupational health then a friend rang and I was on the phone with her for around half an hour.
Then mortifyingly my boss rang me to see how I was and he mentioned that I did sound slurred. Luckily I had told him about the numbness in my face that is causing this.
What joy this disease is? I walk like I’m drunk. I’m talking like I’m drunk. May as well get drunk no I’m joking.
Hope you stay relapse free everyone. Five weeks of this is getting old now..
Sorry to be a whiny witch.
my typing is awful today, so I’m trying out type in by speech.
Talking of speech, my speech is getting slurred at times especially yesterday because I had an hours phone call with Work occupational health then a friend rang and I was on the phone with her for around half an hour.
Then mortifyingly my boss rang me to see how I was and he mentioned that I did sound slurred. Luckily I had told him about the numbness in my face that is causing this.
What joy this disease is? I walk like I’m drunk. I’m talking like I’m drunk. May as well get drunk no I’m joking.
Hope you stay relapse free everyone. Five weeks of this is getting old now..
Sorry to be a whiny witch.