Hi, I got diagnosed last year. I had a back injury and then I noticed my knee kept buckling and found out my right leg was weak. I went to a clinic that said I didn’t need an MRI because was too young to have a stroke (I was 29) and told me to just monitor it. It went away and 6 months later I noticed a small black spot in my vision. There was nothing wrong with my eye so the doctor said there is a small chance it could be MS. I went straight to the ER and after a couple spinal taps and some scans I was diagnosed. Currently I’m 50% blind in my left eye, I have no temperature sensation on my right side (can’t tell the difference between an ice cube and a hot spoon) and my newest flare up, I have pulsing vibrations in my right foot that feels like a cellphone going off 
. I can still see and walk so I consider myself lucky. If nothing else, it’s a little entertaining. This disease never ceases to surprise me! Ocrevus in patients with RRMS reduces the chances of new lesions forming by 80% and my specialist thinks it’s more like 99%. Im lucky to currently have RRMS. It’s not that bad as long as you can put up with the symptoms you got before your diagnosis (they may or may not go away). I think there will be a drug approved for remyelination in the next 10 years… fingers crossed this forum will be outdated before too long! 
I thought I was wrongly diagnosed. Buried my head in the sand. Didn’t look anything up online. But now I wish I had
Hi Stephen, I have not been on any sites for a long time but I did pick up your story when ‘having a look’… I just want to let you know that I have been ‘half blind’ (only saw a grey mass but light was still coming through) in one eye but all was restored after a while… (now quite ‘a while’ ago…), so do not despair just yet! Take care, Jos.
Hi I was diagnosed on Friday with ms I would say mine roughly started in June but didn’t get worse till the October then went to see my doctor I had mri done within two weeks saw consultant roughly two weeks after that was told it potential ms but had to wait for lumber puncture which I had in march and got results 4 weeks later.
But looking back I probably had symptoms for last 9 years but they were nothing major as doctor put them down to other things
That’s exactly what Happened to me. I got up and it was like I’d drank a bottle of vodka. I couldn’t walk in a straight line. I haven’t recovered since and that was in January. The gp and walk in fobbed me off with vertigo.
I was 22 in 1985, and around the same time I lost vision in one eye, and thank ‘him/her’ that it was only temporarily. So I am 62 now, I have officially PP but I am not doing too bad in comparison I suppose… What also caught my eye was you saying ‘many subtle symptoms later’ and especially ‘putting a jigsaw puzzle together……. I still haven’t completed that ‘jigsaw puzzle’ although I am trying very hard by writing a book, that I have sort of started about 4-5 years ago, and is still ‘work in progress’…….. I am just wondering if you are still ‘active’ with regard to this site…. Take care, Jos (dutch by origine btw).
Hello Jos, no, I wasn’t still active until I received an email with your question!
As for the jigsaw puzzle, I was also 22 in 1985 when I also lost central vision in one eye for a few weeks… As the years went by I lost full sensation in two fingers on my left hand (which is still the same), my bladder became a bit more urgent, exercising would give me blurred vision (which I thought was sweat in my eyes) and my stamina would go away at times, to name a few. So, when I was diagnosed in 1991 and I learnt about MS, all those symptoms made sense and the jigsaw-puzzle picture was complete. The puzzle said “MS” 
I hope that makes sense!
Good luck, Hup Hup!
Thank you for responding W-hatsitallab-OUT….., so I’ll call you WOUT (sorry, I need a (short) name to refer to…., this is a dutch first name btw…). It was just that so many ‘things’, including your age!, rang so many bells with me! Anyway, my jigsaw puzzle will never be complete, because I was only diagnosed in the UK, mid noughties I think, after ‘emigrating’ (‘big’ word actually when only crossing the North Sea….) to the UK. My remaining dutch family members, who have hardly visited me in all those years, still refer to me saying that there’s something ‘wrong in my head’, but not in the way of acknowledging that it’s MS…. So I will never, the way it looks like, to rectify one and another and be able to discuss ‘mishaps’ from my dutch past, and put these ‘in the right frame’!, one of the reasons to put it all on paper (WIP)! Bla bla bla…..
‘Hup hup’?……., that reminds me of 1974! “Hup Holland Hup, Laat De Leeuw Niet In Z’n Hempie Staan!” (‘Come On Holland, Do The Lion Proud’….. or something like that…). By the way, has that lion been taken over by the English ladies football team?….. Anyway, that 2-1 lost final against West Germany still hurts!!!
Take care and yes, MS is ‘poo’!
I have osteoarthritis and feel this is the problem. I saw my MS specialist today and when I told him what GP said he just looked at me has they are talking rubbish. Im seeing GP today so I’ll be interested in what she says.
It’s so interesting to reflect on one’s MS journey, isn’t it.
I was diagnosed in May this year, but the more I have read into MS symptoms, I now believe my first symptoms may have started as far back as 2014; with a mix of GPs not taking things seriously and misdiagnosis, I believe I could have been diagnosed years ago, but hindsight is a wonderful thing. Here’s my timeline:
2014 - went to A&E with numbness, cramping and tingling on left side of body, which lasted about a week - had bloods taken and was told it was a vitamin deficiency - but was just told to take a multivitamin and no scans were taken - regret not having investigated this further
2022 - called emergency services as thought I was potentially having a heart attack due to chest and back tightening and being doubled over in pain - it eased after a couple of hours (and ambulance still hadn’t arrived, so I cancelled it) - now think this could have been the ‘MS Hug’ - and another instance of regretting not investigating further.
2023 - started to experience left leg weakness - GP referred me for spine MRI, which came back normal. No further tests done, and essentially brushed off.
2024 - leg weakness continued and fell over a couple of times - later in the year is when different symptoms started happening (poor balance, heat sensitivity, foot drop etc).
2025 - symptoms continued, changed GP who finally listened to me, referred me to neurology and for a brain MRI, and, here we are - brain MRI showed extensive lesions and I was diagnosed with MS after seeing a neurologist.
Lost my eyesight in my right eye back in 1993. Went to see my dr and he said that I had.. wait for it.. hay fever! I’ve never suffered with hay fever in my life. So,
1993 first bout of optic neuritis.
Nothing much happened for several years.
2002 had pins & needles in my chest. Went to my dr’s and tried to get an appointment but didn’t have any availability that day so I drove myself to A&E. When I saw the triage nurse she said that I should have demanded that I see my dr! Yeah right. Not sure that would have worked then or now. Nothing found and just dismissed. I believe as a time waster.
2003 periodic episodes of vertigo, falling over and more pins & needles. Numbness too. I had to wear a heart monitor for several days. They strapped me to a tilt table.. now, that did make me feel bad. In fact the nurse monitoring the equipment knew that something was going to happen just moments before I felt bad as she was already lowering the tilt table so I was horizontal. Again nothing was found.
March 2004 struggling to walk, especially in a straight line, so much so, that a group of people who passed me thought that I was drunk! Couldn’t be bothered getting into an argument/discussion about it. Heavy legs. Burning sensation in my right leg. That particular sensation is still there nowadays. Finally hooray..if you can call being diagnosed with MS in such positive jubilant ways..my GP said that he thought he knew what it was, but wouldn’t say but he referred me to a neurologist who in the September of that year finally diagnosed MS.
Yes, it’s been a journey. But, I’m one of the fortunate ones.. the lucky ones if you like. Still walking. No DMT’s. Still falling over.. occasionally. Lost my eyesight a further two times. Same eye and other eye too. Numbness. Spasticity issues at times. Night-time cramps because I only ever get cramps when I’m laying down. But, still here. Still smiling.
Looking back i have had bad vertigo attack 6yrs ago and was given tablets. I had uti’s which i have never had before had 3 in 2 months. I had scan and didn’t see specialist till one year after, I was then diagnosed with overactive bladder. I was only diagnosed with RRMS after having optic neuritis. The specialist said I most probably had it for years. It’s interesting that we all had systems for so long.
My first ms nurse said that I would have been diagnosed a lot earlier nowadays, louie712002 but, I’m not sure she was right. If your first symptom is something that could indicate various problems, I don’t think you would get a diagnosis then and would have to wait for another symptom. And mine were many years apart, like quite a few of us here.