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

[SatInTheCorner]

Such a difficult disability to deal with. Never knowing if you will wake up tomorrow not being able to walk, see, swallow, hear, piss etc. Some days I can't even communicate

Such shitty thing.

@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.

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.

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.

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).

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.

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.

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

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

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 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.

Hi, I Have MS. Initially diagnosed as clinically isolated syndrome in 2014 when I was 21 after an episode of double vision, then had a second episode of double vision 5 years later and got my diagnosis. Took Tecfidera for nearly 2 years then switched to Copaxone to try for a baby! Baby is due in 3 weeks and I’ve chosen to stay on Copaxone through my pregnancy and breastfeeding because I’m scared of a postpartum relapse!

I’ve had no issues since my last relapse in 2019 thankfully, I feel very fortunate! But I do sometimes worry about the future, especially now I’m adding a child into the mix too! But mostly, I try to stay positive and use it as a good reason to make the most of every day that I’m fit and healthy and because I know that can all change quickly with this disease. The unknown and unpredictability has been the hardest part for me, I struggled with that a lot at first.

I feel so worried for the younger people with MS, its hard enough to deal with when you are much older let alone as a child.

More women than men have MS but men seems to have worse symptoms and faster deterioration.

I also found it crazy that you essentially get to chose your own medication. Madness.

Its a horrible horrible disease and one I wouldn’t wish on my worst enemy and one some many people seem to know or care little about

@SatInTheCorner although it can be tough to do, I quite like that I can play a part in choosing my own medication. It makes me feel slightly more in control. When I was first diagnosed (at the end of the 90’s) there were lengthy waits for only a few options, all self-injectable but getting access to the treatment was much harder. Once I was eligible I liked that I had the freedom to chose. As a busy 23 year old self injecting in to a muscle once a week suited me better than the more frequently injected subcutaneous options.
The decisions now are centred around tablets/infusions and JC virus/PML risks but I still like that I have role to play in my treatment.

I have most of these symptoms and have been diagnosed with FND I've gone from active to virtually housebound

My dh was diagnosed with it about 9 years ago. He has quite a lot of pain but is able to work and walk still.

The uncertainty of it scares us both.

@Whatalife88 My last post was responding to you pressed too soon 😕

Hi, my dad had MS, he struggled bad for the last 7 years passed away last August. Unfortunately, the treatment options weren't great when he was diagnosed 30 odd years ago.

My sister was diagnosed a couple of years ago. She seems to have a pretty good treatment plan with intensive intravenous treatment every 6 months or so. The prognosis for her is good, as far as I'm aware.

I will be starting investigation soon after high optic nerve pressure and numbness, so I guess I may or may not be starting on my own path of living with MS soon.

I hope you have support and a good occupational health nurse. Its a horrible, horrible disease but treatment has come improved enormously. Xx

I have MS. RRMS started in 2008 and just transitioning to secondary progressive now. I’ve had lemtrada and ocrelizumab. Not taking anything at the moment but hoping to start another disease modifying treatment soon.

First 10 years weren’t too bad – some foot drop and loss of sensation and use in my left arm. I’ve been using a wheelchair now for coming up to 5 years and I’m now at the stage where I need it everywhere except in the house.

I don’t suffer with much fatigue or cognitive issues and I’m fortunate to still be able to work full-time in a big job that I love. However, I can’t walk more than a few steps, I can do almost nothing around the house, I struggle to dress myself and I have significant bladder issues.

I thought I’d made my peace with it and found a way to co exist with MS. However, recently I’m struggling again. I’m much more aware that my retirement and old-age will be very different from what I had planned. I won’t ever be able to look after (future) grandchildren by myself and the future is scarier now than it has been previously

I was diagnosed about 7 years ago but was picked up on a scan about 20 years ago. Mine was definitely triggered by glandular fever as that’s when my symptoms started. I’m very lucky I pretty well and exercise every day but I often need a nap and find things hard. I take tecfidera

Not diagnosed but waiting for MRI. Most things been ruled out up to now.
Back history......

5 years ago I was dx with pernicious aneamia……. Also nerve damage to both hands. Left side worse. I receive B12 injections every 8 weeks.
3 years ago I was dx with trigeminal neuralgia.
May 2022 I started having issues with breathing. Heart issues were ruled out and I’m on asthma inhalers but still feel like I have a band squeezing me every day and that I can’t take a deep breath.
June 2022 I started falling over. 3 times I fell and it was like I had an epidural and couldn’t feel my legs to get off floor for a few hours.
Since then I’m now using a crutch to walk and climbing stairs is very difficult. I struggle to lift my legs as they feel
Like my feet are in concrete shoes.
My arms don’t lift and I don’t have strength so can’t lift a kettle etc. for me walking just feels like my legs are on strings and made of jelly.

initially doctor referred me to rheumatologist and did numerous blood tests. Ruled out lupus and lots of other things.
I’ve now been referred to a neurologist for an MRI.
I’m on gabapentin for nerve pain. I’m constantly getting burning pains in my toes and fingers and pins and needles in my feet and then the numbness is quite scary as it happens when I walk. I’ve become housebound.
My mouth won’t open wide either and eating sometimes feels like I’m choking. I’ve lost just over 2 stone since June.
I feel like I’m going mad. I can’t even climb into the bath for a shower. My kids are helping me dress and cook and clean.

I was due back to work but am having to delay my return due to being unable to move around safely.

Before all this started I was going to shows in London using tubes etc and having weekends away clubbing (literally FEB 2022) and now I'm 90% housebound.

I have it roo, been diagnosed 10 years but symptoms go back 30 years. All.the odd things that had happened and the Dr's were clueless about suddenly made sense with the diagnostic so I was relieved that I wasn't going mad. The MS is fairly easy to cope with, people and their attitudes not so easy..

My dad died from MS related complications after a long battle. It really is the shorty end of the stick.

Can totally relate to the 'piss' part in your OP! My god I'm sick of it

What did the school do/not do?