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

@Torturedsoul i hear you. I’ve been in and out of MRI scans for the last 8 years with a variety of “very MS” symptoms and tbh either my eyesight HAS failed because I’m fat/stressed 🙄 - OR it’s time for a diagnosis (of something!).

I’ve got a neurology appt. This week and I’m praying that they apply the McDonald criteria otherwise I’ll probably lose my shit cry and ask “how many disseminations in space and time are you wanting because you’ve medical evidence of at least 3 now”.

I think I’ve probably shot myself in the foot by being “too stoical” and waiting to see what happens “tomorrow” rather than presenting myself at a&e.

although my eyesight is mostly back to normal now (thank you steroids), I’m still exhausted and in a lot of pain.

I only went back to FT work in April after nearly 10 years of being home with the children and I frankly feel like a total failure.

I'm waiting for MRI results to rule out MS at the mo. I have had a host of weird and wonderful symptoms over the years and I broke down in the Dr's surgery and begged to be taken seriously. At this stage, I am hoping it IS MS so I at least know and can have a plan and some answers. The not knowing and feeling like I am going mad is soul destroying.

@NeckFanInSoftPlay wow! I had no idea hyperhidrosos was linked. I had a terrible time with that 8 years ago just before I “lost my legs” and it was humiliating. I’d get out of the shower and the sweat would literally run down one side of my body.

@NeckFanInSoftPlay
I'm posting on a kindle, so it would take too long for the whole sorry tale about the school. If I get chance will post from pc so I can type,but for now, two incidents...
The truancy/attendance officer knocked on the door (this was several months post diagnosis, school knew why he was off) and very abruptly said "can you explain why DS isn't in school today" I replied "because we're going to the hospital (40 miles away) for his chemo in ten mimutes"
Tbf, she was mortified that DS was on her list and was actually really nice person, but it happened again and again - we were on first name terms with her in the end.
The person who phoned to ask why he was absent said "can't you just give him some Calpol and send him in?"w/o
These ended up being minor compared to some of their shit. Still not 1 00% sorted even now...

And have you discussed intermittent self catheterisation with your nurse? That would massively help your bladder issue.

@NeckFanInSoftPlay you may be able to get a grant for a scooter from your local branch of the MS society. My local one does this.

I'm in my forties and have a recent diagnosis after an episode of impaired vision, and episode of leg heaviness 5 years ago. I'm waiting to start a DMD but am well currently with no other symptoms.

It's an incredibly variable disease which is what makes it such a bugger to deal with. There are people living into their seventies and eighties and so on with minimal symptoms, so not everyone ends up very disabled or wheelchair/bed bound.

I've buried myself in research, some of it scary, some of it encouraging - and it's clear that lifestyle modifications especially exercise make a huge difference to progression and disability.

I recommend the Overcoming MS website to everyone. Even if you don't subscribe to the difference an altered diet can make, the positivity and encouraging stories (and an undeniably healthy lifestyle) can't hurt!

I'm a single parent (widow) with progressive MS (with relapses) and have a young child with Autism. It's hell on a stick and my poor child is going to end up a young carer I can see it now...

My mobility is bad. I need a mobility scooter but cannot afford one.
Sick to death of the bladder issues and permanently feeling desperate to go but rarely being able to actually get any urine out. Also the inability to regulate heat is debilitating, my god. I also have Hyperhidrosis of the scalp & face, so it's a bloody horrendous combination, leaving me housebound on hot/humid days. I can literally have a bucket under my face & hair for it to drip into. It got so bad during the heatwave that I had to spend all day with a cold towel covering my face as the sweat was going in my eyes.

I needn't bother expressing how badly the fatigue breaks me as you all already know, right?!

I would like to learn more if you don't mind. A close family friend was diagnosed with MS at a young age and is very private so I don't feel comfortable asking questions but I would like to know how it will affect there life's (the family friends are a couple) moving forward. She takes injections three times a week and is in what she calls remission. Is this to help reduce chances of a flare up? Are there different types of MS?

Also as a separate note my SIL has a lot of the symptoms described but also has a lot of other health issues. She's had a recent MRI and MS hasn't ever been mentioned but does it always show up on a MRI?

What did the school do/not do?

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

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

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..

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 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

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

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

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

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.

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

@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.

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

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.