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What were the first symptoms that you experienced?

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JosephineO

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27/05/2019 at 16:08

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JosephineO

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

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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?

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Pleasance

27/05/2019 at 16:55

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Pleasance

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

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

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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

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14/09/2020 at 15:31

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Courtney_J

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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

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Courtney_J, Community Manager, Carenity UK

MSMaven

17/09/2020 at 15:47

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@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

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23/02/2022 at 16:19

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Courtney_J

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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

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Courtney_J, Community Manager, Carenity UK

Minstrel10

24/02/2022 at 18:24

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

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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

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cwright17

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

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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.

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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

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flowergirl

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@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

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cwright17

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

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@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?

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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

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flowergirl

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@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

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cwright17

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

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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 😱

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

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