Multiple sclerosis (MS)

Von Smallhausen

Von Smallhausen

Von Smallhausen

Man of Honour
Joined
1 Aug 2004
Posts
12,681
Location
Tyneside
My old shift inspector has MS and two years ago a good friend and shift colleague was diagnosed with it although the latter has a more aggressive version of it and it looks like he will be medically retired by Christmas. It is awful to see.

Please note this is not a medical advice thread and I don't want it to turn into one however I am interested in peoples' experiences with it and how it affects the day to day and how those affected cope. Do any members/family/friends live with it ?

I'm pretty certain MS research is the next charity I'll be donating to monthly.
 
I don't know much about it apart from the fact my cousin was diagnosed with the worst version of it a couple of years ago. She went blind in her left eye for several months then suddenly whilst on holiday her vision came back - took her a while to realise what had gone off!
 
I lost the feeling in my testicles for four months but after medication it came back. I count myself as one of the lucky few.
 
My Dad has it and apparently had it when I was little but you wouldn't know it back then. It's sad to see as he was who I looked up to physically as a kid. Around 2004 my parents explained to me and my sister that he had it and all of a sudden he seemed to be on a walking stick and using a mobility scooter. He has slowly deteriorated over the past decade although he still works and manages to occasionally go fishing etc . He has a very weak arm and leg and takes a cacophony of medication for pain.

He's good at covering for the pain but I can tell it's not good at all :( I do what I can to help him.

I did the Spartan Race last year for MS Society UK (At almost 19st..ouch) and raised almost £400. Very worthy cause and lost of breakthroughs on the horizon.
 
My GF was diagnosed with MS a couple of years ago, this a was a difficult time as she has always been fit / healthy and generally problem free up to that point and being in our mid twenties, we didn't expect anything of that magnitude to affect our lives.

She 1st noticed a "fuzzy" sensation like pins and needles which got progressively worse over time and then moved onto full relapse / seizures (often in public places) which were obviously a tad scary at the time because I had no idea what was going on.

A (large) number of hospital visits later and after the official diagnosis and various different treatments and medicines later, we lead a normal life as possible. She does get tired more quickly than the average person and we have had to reduce her hours to part-time (still 35 hours + as a children's nurse) but the medicine she takes basically prolongs the time between the next relapse, could be 2 years, could be 15 years before the next one. We do consider to be "lucky" in that it's not the progressive type.
 
I have MS. Type 3 recessive, remittant so it doesn't cause me too much trouble. It's mainly the fatigue that gets me. Some days it's more than I can do to drag myself out of bed. I also get continuous pain in my legs like pins and needles.
There's a 50% chance that I will go on to develop progressive degenerative MS which sounds like what your college has.

It's a terrible condition.
 
My Mother in Law has Primary Progressive MS and she has been absolutely shafted by it unfortunately. She is totally dependent on care from my wife and her sister and home help calls during the day. I would say that each year she ends up in hospital about 6 times for one thing or another, usually one of her symptoms flairing up to the point were it cant be safely managed at home.

Lately it seems that as soon as the doctors figure out how to mange one of her symptoms, another one flares up. My wife will be over 4-5 times a week to help her Mum out in the evening for a few hours, so it takes a fair bit of a hit on the time we can spend together. Her sister still lives with her mum and doesn't feel like she can move out.

Generally the hardest thing is trying to make plans more than a week in advance, because there is always a good chance that we will need to drop everything and drive over to help her out. Thankfully there are a few charities that help her out with respite, while it is only for 2 weeks a year the difference it makes to how my wife feels is phenomenal.

It's an absolutely horrible disease and there seems to be relatively little treatment from what we have been told over the last 12 years. It seems to boil down to managing her symptoms.
 
Last edited:
Diagnosed in 1983 and wheelchair bound after 6 more weeks. My main problem at that time, apart from mobility, was fatigue and it was that which made me retire from work 6 years later. The fatigue I got was completely overwhelming so eventually made work impossible.

Since retiring, I am able to take things at the pace I can manage so that has been an improvement.
 
I'm the sane as Rilot, R/R MS. Its the fatigue that gets me and the side effects of all the medication. When its bad, feels like sunburn on my arms & back thats being scratched with sharp nails. Just take things a lot slower now.
 
It's getting to the point where I'm going to have to give up work at some point due to the fatigue. Companies don't take well to "I'm sorry I can't drive to that customer because I'm too tired".
Unfortunately I can't afford to stop work as the mrs earns enough that I wouldn't be entitled to ESA or anything. Unfortunately she doesn't earn enough to keep us in the house we're in right now alone.

Taking each day as it comes and working / saving as much as I can to prepare for when I cannot any more.
 
Horrible, a friend of mine died from it, a few years ago, and to see him going from healthy, to nothing was so sad.

Another thing, is that MS is very mych like CFS.
 
Sister in law has it, she has gone from being healthy to giving up work,hobbling around with a stick, mobility scooter, her balance and eyesight have been badly affected so she can't drive any more, and she gets confused easily. Horrible disease.
She gets DLA. Rilot have you looked into PIP?
 
My girlfriend was diagnosed with relapse remitting last year after she lost mobility in her lower arm. Thankfully steroids helped that recover but she still gets lots of pain and has developed other things because of it and the medicine she is taking has some naff side effects. The 'support' she gets from the MS team from the QE is pretty poor. We and she especially always come away after a meeting without any real comfort which doesn't help things. Her nurse has the social skills of a ****ing donkey as well.

Hopefully we're finding a pace of lifestyle which doesn't cause it to get worse but that's the worst thing, she's an amazing person who has so much potential and has the desire to be the best at everything she does but her body just doesn't let her sometimes. It's horrible.
 
There are many levels of MS, my mum had MS and died aged 54 due to it, her whole body shut down effectively.

It affected mobility, she was in a wheel chair for the last 3 years of her life and the last 2 of the 3 she didnt even have her memory functions working, she wouldnt even know who I was at times.

The mental state she was in, was far worse than the physical. Even though the physical state was bad too. But seeing her mentally impared was for me worse.

She had to have a nurse come to the family home 3 times a day to help "look after her" and help with toilet etc.

I wasn't living with my mum when she was in the worst of it towards the end.

The thing that was so bad for me was that she started to improve and regain her mental state and for 3 months she was much better and even started to walk again with help.

But then she was admitted to hospital with pains in her legs, and she was kept in overnight, we had a call at 3am and we knew it wasnt good news. By the time we got to the hospital she had gone.
 
To those with personal experience of MS is the pain you have neuropathic ?

I have muscular dystrophy, neuropathic pain is awful when it come on but the treatments are awful too, grit teeth and bear it or treat it and can't function.
 
My wife was diagnosed about 5 years ago. She is being treated as relapsing remitting but she certainly has some progressive effects such as gradually worsening tremor in both hands. Writing or using a mouse is out but she can manage an ipad better. Sharp knives, buttons are a no-no and I am getting quite good at make up. She had to give up her normal job due to memory issues and fatigue but is fortunate to be able to work 1.5 hrs a day as a dinner lady.

She has managed to keep basic DLA and is in the support group for ESA which thankfully doesn't take into account my earnings. This has been a hard battle every time it has been assessed though.
 
Hitman_Leon said:
To those with personal experience of MS is the pain you have neuropathic ?

I have muscular dystrophy, neuropathic pain is awful when it come on but the treatments are awful too, grit teeth and bear it or treat it and can't function.
Click to expand...

If the neuro pain is bad, it feels like finger nails being dragged over sunburn.
Manage it with medication but it took a few months to get the dose right.
 
You must log in or register to reply here.
Back
Top Bottom