Home
Forums
Multiple sclerosis Forum
Living with multiple sclerosis
What were the first symptoms that you experienced?

Back

Patients Multiple sclerosis

What were the first symptoms that you experienced?

85 views
1 support
10 comments

JosephineO

Community manager

27/05/2019 at 16:08

Good advisor

JosephineO

Community manager

Last activity on 15/07/2024 at 09:21

Joined in 2018

989 comments posted | 44 in the Multiple sclerosis Forum

6 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator
Friend

View profileView Add a friendAdd Write

Hello everyone,

MS brings a whole host of symptoms that many patients endure before being diagnosed. Some of the most common symptoms are double vision, bladder issues, pain and spasms...unfortunately, the list goes on.

What symptoms did you first experience? How did you manage them?

All comments

Pleasance

27/05/2019 at 16:55

Good advisor

Pleasance

Last activity on 16/05/2023 at 11:23

Joined in 2014

63 comments posted | 29 in the Multiple sclerosis Forum

Rewards

Good Advisor
Contributor
Explorer
Evaluator
Friend

View profileView Add a friendAdd Write

For me it was double vision, which was very disconcerting indeed...

See the signature

Pleasance

What were the first symptoms that you experienced? https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/what-were-the-first-symptoms-that-you-experienced-2841 2019-05-27 16:55:51

Courtney_J

Community manager

14/09/2020 at 15:31

Good advisor

Courtney_J

Community manager

Last activity on 13/10/2022 at 16:47

Joined in 2020

1,279 comments posted | 58 in the Multiple sclerosis Forum

11 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

Hello everyone,

I thought I would revive this older discussion because it may be interesting to see how MS is different for everyone!

So, what were the first MS symptoms you experienced? Did they lead to seek out a doctor or did they help determine your diagnosis? How did you handle them?
@Charlie12345‍ @Harps10‍ @Fl33tw00d‍ @Jemgavlaa‍ @EmilieH‍ @Kareema‍ @Claire1974‍ @Cherylmoore‍ @thembrough‍ @Davbod1870‍ @vonnywonkie‍ @Carol50‍ @Granmarshall‍ @Barbershop19‍ @NicLiv‍ @Pbeeton‍

Feel free to share you stories and experiences here! emoticon cute

Take care,
Courtney

See the signature

Courtney_J, Community Manager, Carenity UK

MSMaven

17/09/2020 at 15:47

MSMaven

Last activity on 10/04/2023 at 18:57

Joined in 2020

13 comments posted | 11 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@Pleasance I also had issues with my vision and then it was my balance. I would stumble a lot and fall occasionally and my family and I thought it was funny until it kept happening and happening. I thought it was an inner-ear problem and eventually after the whole rounds of scans and tests it was MS.

Courtney_J

Community manager

23/02/2022 at 16:19

Good advisor

Courtney_J

Community manager

Last activity on 13/10/2022 at 16:47

Joined in 2020

1,279 comments posted | 58 in the Multiple sclerosis Forum

11 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

Hi everyone,

How are you doing? Have you seen this older discussion? 😊

What were your first MS symptoms? Did you know they were signs of MS, or did you realise after your diagnosis? Have they eased or changed over time?

@Impledimple @Narcisse @waggywoo1 @rubyrose69 @Bryan123 @MrsBBumble @02920.teri @Nealson @KarenTravers @Rose1962 @Lee411 @lucy2000t2000 @Drclayyon @Jackline @Lizgee @Lenny62 @Georgewash

Take care,

Courtney

See the signature

Courtney_J, Community Manager, Carenity UK

Minstrel10

24/02/2022 at 18:24

Minstrel10

Last activity on 25/03/2023 at 09:25

Joined in 2016

2 comments posted | 1 in the Multiple sclerosis Forum

Rewards

Committed
Explorer

View profileView Add a friendAdd Write

I had loss of light touch sensation from the waist down, but wasn’t diagnosed for another 30 years. I had optic neuritis 2 yrs after it but this was diagnosed at a different hospital and no one joined the dots. It took an episode of double vision in 2016 for me to be told it’s MS

cwright17

04/04/2022 at 12:36

Good advisor

cwright17

Last activity on 25/04/2025 at 20:43

Joined in 2021

48 comments posted | 31 in the Multiple sclerosis Forum

11 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

My first symptom was simple partial seizures. You know, the whole waking up in the middle of the night, after having a "deja vous" moment, until my bro caught me throwing up in the morning, went and told mum, she then looked online at the NHS symptom checker, saw that we needed to go to A&E, so bro was sent to school (thankfully at the top of our street), our nearest hospital was a minor injuries one so I got seen quickly. I had a seizure as the nurse was doing my pupil reaction and got sent to the nearest big hospital to get seen by doctors, and a referral to our local neurology hospital. An MRI, A Level exams, and a brief hospital stay later, I was diagnosed August 2014. All that would have been done had my GP not put down my seizures as anxiety.

See the signature

Charlotte Hargreaves-Wright (he's also double barrelled his name so he can be "Wright" half the time)

flowergirl

05/05/2022 at 21:29

Good advisor

flowergirl

Last activity on 02/06/2025 at 12:03

Joined in 2022

16 comments posted | 8 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@cwright17

omg it must have come as a shock to you! Seizures as a first symptom.. must have been hard.

For me it was double vision as well, I guess it's a "stardard" first symptom. Was diagnosed in my 30s.

cwright17

05/05/2022 at 22:41

Good advisor

cwright17

Last activity on 25/04/2025 at 20:43

Joined in 2021

48 comments posted | 31 in the Multiple sclerosis Forum

11 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

@flowergirl Nah, not that scary. Just some simple partials, where you don't stop, drop and shake, it just looks like a person that can't speak, looks gormless, and bad deja vous feelings. Maybe vomiting at the end. Then, last year I had a couple of generalised ones, the whole stop, drop and shake. I'm happy I told my partner to call an ambulance if I were to have those, as they're not normal for me. 27 days in hospital, a couple of steroid infusions, 80% of my walking ability back and an MRI later, my neuro had enough evidence to argue for me to get put on ocrevus 😁🙏 I do understand your double vision. My "clinically definite" symptom was vertigo, and then an MRI at a private hospital in Blackburn. I'm still amazed I managed to walk to the nearest train station without getting myself run over 🤣

May I ask what your clinically definite symptom was? Are you still battling double vision?

See the signature

Charlotte Hargreaves-Wright (he's also double barrelled his name so he can be "Wright" half the time)

flowergirl

05/05/2022 at 23:11

Good advisor

flowergirl

Last activity on 02/06/2025 at 12:03

Joined in 2022

16 comments posted | 8 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@cwright17 have you been diagnosed with epilepsy as well? I have never had seizures, so I can't even imagine how scary it may be, especially for your family/friends. Was it ocrevus that stopped your seizures?

it was a coupe of episodes of double vision that made my GP refer me to a neurologist, so I guess it was really my first clinically definite symtom, diplopia, as they call it. I have had more episodes since, but fortunately they have always been short term.

cwright17

Edited on 09/05/2022 at 12:14

Good advisor

cwright17

Last activity on 25/04/2025 at 20:43

Joined in 2021

48 comments posted | 31 in the Multiple sclerosis Forum

11 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

Yep, diagnosed with epilepsy too in Sept 2014. My family and friends are very understanding of it. Like, I'm currently in A&E after having a couple of generalised ones at 2ish this morning, and I'm happy my partner knew what to do, because his best friend has generalised, non-MS, ones. I even had to get him into recovery position, waiting for him to enter the post ictal state. My mum is very understanding too, as my uncle (her brother) has generalised seizures with his epilepsy. She's told me once of where he's had a seizure at high school, and as she was waiting for him to enter post ictal, she had a cigarette 🤷‍♀️😂

Thank goodness they're short term, I wouldn't be able to cope with double vision, not for longer than 10 minutes 😱

See the signature

Charlotte Hargreaves-Wright (he's also double barrelled his name so he can be "Wright" half the time)

Members are also commenting on...

Articles to discover...

30/05/2025 | Testimonial

Multiple sclerosis: “I’m strict with my rest because without it, I can’t function at all.”

30/05/2025 | Nutrition

Vitamin D and MS: Can supplements of the sunshine vitamin reduce relapse risk?

07/03/2025 | Advice

Staying positive with multiple sclerosis: How can you protect your mental health?

04/10/2024 | Advice

Multiple sclerosis (MS) and sexual dysfunction: everything there is to know!

19/05/2017 | Testimonial

Adjusting to life after being diagnosed with MS

23/03/2018 | News

MS drug hope for secondary-progressive stage

13/06/2016 | News

New treatment can halt aggressive multiple sclerosis

02/10/2018 | Advice

Brain fog: Causes and how to cope

What were the first symptoms that you experienced?

All comments

Give your opinion

Members are also commenting on...

Articles to discover...

Medication fact sheets - patient opinions...