Remembering my first MS symptom

Hi I have been thinking back to my first MS symptom. It was labyrinthitis (room spinning vertigo) and I had nausea. I saw my GP and she put it down to an ear infection at the time. My neuro thinks this was my first MS relapse.

Do any of you guys remember your first MS symptom, was it a relapse or a symptom ?

I think mine was the start of the MS. I remember I was in town walking about and all of a sudden I felt like someone had poured warm water on my head. I could feel the heat spreading down from my head to my spine. That was definately my first symptom. Xx

darn now my head hurts having to think back i think it was a sick feeling and a back spasm i had on the Lifeboat many years ago approx 2001 and my report writting under red lights used to disappear but my first sympton that they said yep tis MS was left eye sudden blindness on Jan 29th 2013 but i still watched the 6 Nations Rugby game before going to A&E and even got back to watch England play Scotland in the evening so not all was bad :slight_smile:

respect sheep

I woke up with the left side of my face numb, it got worse over a couple of days. Visit to the Dr, he said iit was Bell’s palsy . The numb feeling went right down my left arm… At this point I thought it was a stroke.

Fast forward a week at a private app. Neuro sent me for scan, lumbar puncture , evoked potentials, 4 days later bam! Sorry it’s MS
tilly x

Tingly pins and needles in my feet, then numbness in my legs that crept up to my waist. I still have the tingle in my feet - it never went away and a numb band around my middle. But after 10 years I am used to it now.


I was in France and I couldn’t walk properly. The only way I could describe it was my left foot felt too light, like it had balloons attached. I just put it down to the holiday vino

pins and needles in my feet. i ignored it because a friend had just been diagnosed with terminal cancer.

she passed away and then i started to notice my pins and needles.

like an idiot i googled it and dr google diagnosed me with peripathetic something or other which could result in amputation of my feet.

so i went to a real doctor and started on the merry go round of ms diagnosis.#

ah well, my feet are still attached!

carole x

I used to think that it was double vision (at aboout 23 yrs old, shortly after having flu) which I later learnt was when “possible MS” was written on my notes, but the more I’ve learnt about MS the more I think I had it along time before that! The burning pain that I get in my chest, that is now treated as MS, started when I was 17 after having teeth out under general antithetic. At that time i also had a couple of bouts poor balance/virtigo, which at the time I put down to drinking a sherry ( yes I know, so old fashioned it’s almost quaint!) when i had a cold. But the first time anyone mentioned MS to me was when I was about 30 and went to my GP because I had tingling and numbness in my hand and fore arm and he said “I don’t think its MS” it hadn’t accured to until that point that it might be! Although I now look back to my childhood and wonder if some of my clumsiness and the occasional odd incident ( like realising that if I kept walking in the same direction I would walk in to the road but being unable to change direction, I was eight) might have been early signs?

Mine was pins and needles in my left hand after having my nails done …then next day spread down left side, two days later it had gone. Full relapse about two years later x

Optic Neuritis in my left eye 14 yrs ago. Went to see dr he said I had congestion problems - go home and take some paracetamol!!! 3 days later was completely blind in it, went to see another dr at the practice, he sent me straight to hospital but no treatment was offered to me & still blind in it now, feel very fortunate though, my main problems are balance, vertigo & cognitive so could be a heck of a lot worse.

Kate xx

I too had labyrinthitis 6 years ago, I think it was my first relapse .

I remember mine like it was yesterday.

Mom and Dad had gone away on holiday, went shopping to asda n nearly blacked out. Vision went, legs felt numb and I felt like I was on a rollercoaster. Dr said it was vertigo. Then I started getting dizzy all the time and getting numb legs. The dr didnt want to refer me to a neuro so I three a paddy and said I would go private which seemed to work.

sam xx

With hind sight, mine was a wet patch sensation on my left knee over 20 years ago but it wasn’t until both legs went numb up to my waist about 3 years ago that I started on the merry go round that would lead to diagnosis last year.

Again, with hind sight, there were other things during those 20 years but none of them particularly serious or significant enough to do anything about until those numb legs.

i cant remember…


How strange!
I had a bout of labyrinthitis in 1972, it was eventually diagnosed (by 3rd GP) as inner ear infection.
Skip forward to 1994 had a full blown relapse, double vision, “eclectric shocks” numbness and pins and needles in various parts of body.
Neuro at the time said he didn’t think it was MS! But it wasn’t syphilis!
Skip forward again to 2004, had definitive relapse, paid to see Neuro privately as didn’t want to wait 6 months again to see one
on the dear old NHS and after examining me he said he would need to do some tests but yes it probably is MS.

Deep joy!
At last I had a lable I could put on the “monster”!

Take Care all!


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Diplopia was the first recognised one in 2005, went to the GP thinking I’d strained my eyes, she immediately recognised it as neurological and refered me to a neurologist who diagnosed it as 6th Nerve Palsy. Looked up this was something MS could cause, 1 year later it was confirmed with the second relapse.

I can remember vividly, although it’s over 20 years ago now.

Christmas 1992. I knew what I wanted to say, but when I went to speak nothing came out. We were selling our house at the time and it made things very difficult trying to speak to our solicitor!

At the time I was really scared I was going mad but was too embarrassed to tell anyone and didn’t see my GP. We didn’t have the internet then (ahhh, innocent days!) and I had absolutely no idea what MS was.

There followed many years of various different sensory symptoms and I forgot all about that incident until after dx, when the penny finally dropped - “Ohhh! That’s what that was!”

I had sooo many years thinking I was imagining my symptoms, occasionally visiting the GP but, surprise, surprise, things clearing up after a few weeks. One time, my GP actually told me “don’t worry … it’s NOT MS”. In my naivety/stupidity I remember I even cancelled a neuro appt because the numbness had gone away!

So when I was finally dx in 2008 I was a kinda relieved to know I’m not a hypocondriac!

Emma x

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