To ask if anyone with Multiple Sclerosis wants to moan? Or others want to learn about MS?

My daughter was diagnosed last week with MS following loss of eye sight and a spell in hospital on steroids in July.
Now waiting for her initial appointment with the MS hospital so we can look at treatment options.
She is only 23,I feel helpless apart from being able to give emotional support. I know there are some amazing treatments out there and lots of research into new treatments.
It is just the unknown that scares me and her too.

Have any of you pushed for stem cell treatment? The NICE guidelines are about to change to offer this a standard line do treatment if you’re relatively young and it’s not become progressive yet. Really really something worth looking into before your symptoms become
too disabling.

My dear Grandad had it. It affected his mobility terribly but it restricted his life before then quite early from his diagnosis. He was a real gentleman and he was terrified of becoming incontinent. I think he had one episode where this happened and he was so mortified that he was reluctant to go out in case it happened again.
He died a few years ago when he was 93. He had to rely a lot on carers and despised every minute of it. Mentally he was still perfectly ok which in a way made it more cruel as he was so aware of his circumstances. My Nan (his wife) was the complete opposite. She was physically fine,no problems at all but had severe dementia. She forgot us,imagined people were in her house and had to go through a fairly degrading process. She died last year aged 96.
Even though my Grandad had MS for many years it still wasn’t his cause of death. He died from prostate cancer. It is of course still a very cruel disease. I genuinely feel for anyone suffering from it

I do not have MS myself but I have been affected by this wicked, debilitating disease. I watched my mum gradually lose her independence and dignity; becoming wheelchair bound, reliant on carers, permanent catheter, bowel evacuations just to name a few. After 24 years from being diagnosed, she died at age 54 due to complications associated with progressive MS (aspiration pneumonia). She was my best friend. The whole experience will stay with me forever

As my lesions were picked up on a research MRI, there was no doubt about it. I am fortunate that I was diagnosed in this way. As I'd got used to it Before it caused problems.

In hindsight I think I had my first symptoms at about 19. Not long after having Glandular fever. Apparently there is a known link. I was cuddling a baby and got a really weird feeling around my face. Now know it was hypersensitivity. A year before I was diagnosed, I had what I think was my first relapse. The fatigue was bone crushing.

I’m in the far north of Scotland, but my first symptom was a decade ago when I was living south of London - so perhaps there’s a genetic element at play (the recessive blue skin gene).

My daughter developed ADEM after having the flu vaccine in 2014 and lost the use of her legs for quite some time. She eventually recovered but then had an attack of what turned out to be optic neuritis now diagnosed as neuro myelitis optica and has had a fair few relapses luckily always gets her sight back after an attack but her sight is not brilliant now, she’s only 20 ,originally it was thought she had Guillain-Barré syndrome. I worry for her future.

My youngest son was diagnosed with MS about 18 months ago when he was 14.
The hardest part, which made an already awful situation much, much worse, was the BLOODY school!
I am angry, at the school, at the disease, and get a bit lot ranty, but will try and post more if I can help answer any questions people ask, and maybe a bit more about how he was diagnosed.

@Littlemissprosecco During my teenage years I suffered from a couple of periods of crushing, bone aching fatigue, as well as sudden numbness in my legs which would cause me to fall over. I was also seen by a specialist (details are hazy now!) as an unusual gait was noticed during a visit to A&E. Possible CFS/ME and growing pains were given as a reason. Recovered fine.

My actual diagnosis at 20 came swiftly following tests when I developed Optic Neuritis. From ‘healthy’ to blind in one eye and an MS diagnosis took about 3 weeks.

Dsil has MS, diagnosed in her early 30s. She does really well, says she's lucky to have a really supportive MS nurse who listens to what's most important to her and helps her find ways to keep doing those things.
But all in all it sounds thoroughly shit and I'm sorry so many people are having to deal with it. We live in the north of Scotland and I know there are potential links to lack of sunshine and vitamin D. Dsil gives us a massive tub of vitamin d supplements towards the end of September every year and makes our teenagers promise to take them. No idea if it's effective but if it makes her feel better we'll all take them.
Fatigue and foot drop are her worst symptoms. I've had chronic fatigue since having covid last year so I can sort of understand that one. But just randomly finding yourself unable to control your feet must be horrible.

Hi all,

I don't have a diagnosis but this is the perfect thread for me to ask question if you don't mind? Also sorry to hear you are all suffering x

I have been 'diagnosed' with fibromyalgia for almost 10 years, nothing else has been ruled out. I have a lot of symptoms of MS but they refuse to test me. Can someone please give me their early symptoms and how it affects you day to day?

I have chronic fatigue, pain all over, I get dizziness that comes and goes, I've had the blurred/lack of vision in my eyes but gp said panic attack, swallowing difficulties(not every day but some days and has come on in last 18 months), I have an over active bladder, spasms in my feet, hand tremors a lot, numbness in pelvis and legs on occasion that can last for days. Is anyone having any of this? Perhaps it is fibromyalgia? Gp says fibro and health anxiety

I have MS, it is rubbish, very difficult to live with, never dreamed I would be in this position. But I try to keep positive, some days this is easier than others! Hugs to everyone & their families in this situation.

I was diagnosed about 5 or 6 years ago. It was a bit out of the blue following a strange symptom. My mobility is a bit affected but I don't know how much of that was lockdown related or how much was solely due to MS. It's not lots of fun and because of treatment I'm immunosuppressed.

Following as I'd like to know more. A member of my team has this, she has so many fears about the future. She's the most beautiful women, inside and out and only 25 years old.

I’m so sorry everyone that this horrible illness even exists and that there are so many struggling out there.
But can I ask?….. In hindsight, what were your earliest symptoms, and how long and what did it actually take for you to be taken seriously.

Awaiting diagnosis following a spectacular “relapse” last month when a locum GP and optician out 2+2 together and sent me straight for a CT.

There have been incidents over the years and I’ve had multiple MRIs which show a metric shit ton of lesions - but the usual diagnosis is “fat”.

tbh, until I lost my sight last month I was berating myself for being fat/lazy/useless etc.

im not sleeping well right now because tbh I’m expecting the neurologist next week to say “ah yes, youre fat - that’s why you have diplopia, TN, dozens of lesions and can’t move”.

Yep. I'm sick to fucking death of needing to nap every day, not knowing if my legs will work properly and dizziness that is debilitating. Being judged for having a blue badge, if I'm not using a stick that day. Worries about how it will play out as I'm only in my forties and trying to succeed in my career when sick days get in the way of that.

I'm usually positive but things feel hard at the moment. And no one really understands my issues despite me explaining how I'm personally affected.

Had it almost 40 years.

It's a pain in the... Well, everywhere! Mine is secondary progressive, described as 'relatively benign', meaning that most of the time I do reasonably ok but not well enough to hold down a job.

This summer's heat has floored me so I'm struggling right now and hoping for some improvement soon.

As others have said, it's the not knowing what's next that's the most fun.

I've got MS too, diagnosed 17 years ago following symptoms such as leg numbness, l'hermitte's sign, fatigue etc. I chose not to have any medication.

I had a few relapses over the years but nothing too awful. Apparently my brain and spine are "very florid" but the only symptoms are the bone crushing tiredness and a dropped foot (which means it's now progresssive). I'm very lucky compared to others but experiences are so different.

Not me but my poor mum was diagnosed with PPMS. I know how tough it can be

I have MS too. Diagnosed in 2004. Relatively well for the most part for which I am thankful. I still work full time, but manage it carefully. As others have said it's the uncertainty which is really hard. Sending hugs to all.

I have MS. Diagnosed in 2017, first symptom in 2016 I think.

I haven't had a relapse for a couple of years now. But I do get extremely fatigued. I just can't do as much as other people. I just want to lie down in a dark room most of the time.

I have two small kids and that makes it difficult too.

Currently waiting to go back on treatment after having a baby.

I don't have any mobility issues at all, just fatigue now. Some days are better than others. I have no idea if one day it will really kick off or if it will stay like this. It's really hard to live with not knowing what the future brings.

Not me, but my dear mum was diagnosed about 5 years ago.

She had years and years of being fobbed off by medical professionals. When she finally had her diagnosis, the consultant went over her medical history and said the MS was responsible for almost all her health problems over the previous 10 years 😩. She has progressive MS so there isn’t really any treatment, just symptom managing.

Following this thread to hear others experiences and for any information that might help her. We are lucky in that currently her progression is slow, but I am absolutely terrified for her future. I can never tell her how I really feel. I am so angry (for her) that she is robbed of her best years with her grandchildren. She lives for them and sometimes they are her only reason for carrying on at all. After working her arse off my whole life to give us the best lives, she can’t even enjoy her retirement due to the constant pain, spasms, mobility issues, exhaustion etc.

Sorry for the rant, it’s difficult to talk about it in real life. It is such a cruel disease.

Me! Diagnosed 23 years. Symptoms from early teens, diagnosed when I was 20.

I have a mixture of cognitive and physical issues which can make things really tough. I’m on my 5th MS drug.