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.

MS is a process where the immune system attacks the myelin sheath of nerves.

Stem cell therapy will replace the damaged myelin, but does not stop that process. So eventually the MS will return as the demyelination isn't cured.

Whether or not this affects the rate of progression is unknown and likely to stay that way as there's too many charlatans around. (Why does anyone think stem cell therapy isn't a recognised treatment in the UK ?).

In the 30 years I have been following MS research, the closest we've got is a suspicion there is some viral element involved. Possibly in combination with some other environmental and geographic factors like latitude and urbanisation. Things aren't helped by the fact that our understanding of the immune system is just above zero. Throw in how allergic reactions can be triggered and manifest themselves and you're probably up to speed with current research.

Remember that medical science is one of the most staid in the spectrum. So new ideas rarely get aired. I'm still old enough to remember when medical science insisted (insisted I tell you !) that stomach ulcers could not possibly be viral and that anybody who said they were was a gibbering idiot who should be ignored forever. That was right up until stomach ulcers where shown to be viral and if you now doubt that you are a gibbering idiot.

Science is where you mustn't confuse knowledge and intelligence. Medical science especially so.

The only thing that has improved in 30 years (thanks to MRI) is diagnosis. It used to be relapsing/remitting could take decades to be diagnosed. Especially with waiting lists of months. By the time you get seen that pain/twitch/numbness has "gone away" - rinse and repeat. Add to that the previously noted asymmetric sexual distribution and the UKs longstanding shit healthcare for women, and you have a disease that could go undiagnosed for 20, 30, 40 years.

@SerendipityJane I agree with everything you said there.

I remember when I was first diagnosed nearly 20 years ago, I bought a book on ms. One of the things it stressed was that you mustn't exercise too much, have a rest! Take it easy! That stuck in my mind and I used it as an excuse for too long. Now the consensus is the opposite, and it's accepted that it's incredibly important to exercise to build (and retain) muscle and flexibility. I wish someone had told me back then the importance of exercise- use it or lose it! In fact, when I see the neurologist or ms nurse they still don't ask me about exercise ( I aim to exercise daily now). They just want to give me symptom relief drugs that don't work or make me feel worse.

Can I point out that the title of this thread is not ' Tell Me How Your Relatives Suffered Horribly And Died Of MS'. I'm sorry for your experiences but please, those of us currently suffering don't need to hear this.

Fatigue is a key symptom of MS. (Presumably your body wears itself out fighting itself). It can be a delicate balance to maintain function.

Been into work twice this week (usually wfh) and I can now hardly move. Broken down to my boss last night, the not knowing how unwell you are going to become (for me) is harder to live with than actual symptoms.

For those that do know, you get given a list.of treatments in line with the severity / relapses you have had. Before stemcell treatment for example, you must have tried this, this and that to get approved for it (unless you have 40k to pay for it).

SPMS sufferer here. Officially dx 16 years ago.
Happy to chat if anyone wants to. Tag/DM.
Hope today is a good day for you all xx

Sorry to hear this. I also found going to the office absolutely exhausting. Going out at the weekend I find exhausting as well. I would just mostly stay home and lounge around. When you say you can't move, is it fatigue ? Or is it stiffness etc ?

Does anyone ever get nausea caused by MS ? I feel nauseous all the time / like I have motion sickness without the motion. I've often wondered whether that's related to MS. I did some Googling and it's actually a thing. As there are nerves in your stomach etc. I'm sure if I told my neurologist ( which I have ), he'd probably say it's nothing worth noting.

My mum was diagnosed with progressive ms about 30 years ago. Within 5 years her mobility was declining and within 10 years she was in a wheelchair. I have been caring for her for over 20 years. 10 years ago we sold up and bought a house which was suitable to be adapted for her and she has lived with us ever since. She has been housebound for the past 7 years although she can still transfer herself from her electric wheelchair to her electric chair but needs help with everything else. She is now 85 and the main day to day problems are pressure sores which are hard to treat and pretty much impossible to heal and Lymphedema to the legs which to are trying to stop ulcerating. She is in a lot of pain from the pressure sore on top of the nerve pain she has had for years. MS is a terrible disease and it is the luck of the draw how quickly it progresses. Mum was lucky that she was in her 50’s when symptoms got so bad that she ended up being diagnosed but she has probably had it for years before as her aches and pains were put down to a bad back without any real investigation.

Both I think.

Never had sickness but who know with MS.

Yes - this, absolutely. Horrible thread for someone newly diagnosed to read. This may be part of the reality of MS - but not the only outcome.
For context, my aunt is 72 and can still walk two miles (slowly). She only ever had two relapses both I think occasioned by stress - death in family, infertility struggles. There are many stories like this, and with the newer effective drugs on the market, hopefully they'll grow.

People tend to turn to the internet when they're newly diagnosed, experiencing problems - or want to express difficulties, but get on with their lives when they're doing well.

It's a variable disease - the uncertainty is the killer as to which path you'll take yourself, and that's dependent on a lot of things - DMDs, lifestyle and probably a disease-specific component as well...

@nowandnever completely agree! I also joined lots of Facebook groups when I was diagnosed and that was probably the worst thing I could do. They were full of people who were angry, doom and gloom and I'm considerably sicker then you, so none of them helpful or informative I now have a small group of friends that have MS and they have a similar outlook to it to me and we do support each other. I would say the best thing I did was avoid the dramatic MS'ers, have a positive outlook and positive people around you. Also be prepared for the stupid comments ie now you can smoke weed, my aunties cousins friend had it and they are fine/dead etc.

I always say coping with the MS is fine, dealing with other people is hard.

The thing I’m finding the hardest about FB groups is that they’re making me feel like a lazy fucking loser.

all the “yes I work full time on a building site carrying 2 bags of concrete under each arm, am a single mum to 8 and live in a shoe, ride 6 horses every day and run 3 marathons a week - anything less is just sheer laziness”.

I read this from my horizontal position and every time I walk to the kitchen I fall over.

@TightDiamondShoes but you have to remember some people will manage that, others will do it and be floored for a week after or some just won't be able to even try. Right now I'm ok and probably feel the best I've felt in a very long time, but I doubt it will last and expect I'll be wrapped back up in my duvet sooner or later as that's the nature if the beast. It's not easy to live with MS

The opposite is true of stem cell=HSCT. It does not repair any damaged myelin but it does aim to reset the immune system and prevent further inflammation/relapses and new disease activity.
that is why having it too late is pointless.

How helpful for everyone on the thread who has MS. You shared this because?

Now had it nearly 40 years, never been given a drug for it but hoping for something soon as now secondary progressive. My sister also has it and was primary progressive. If anyone has questions happy to answer.

Best username ever 😊

Yup this

@CosmopolitanPlease Without getting bitter and twisted, that one aspect does frustrate me! I’m almost glad that other people remember it was really the case!

“How to live with MS” - the advice has changed so much over the years. At the end of the 90’s the advice from my MS nurse, my neurologist and (like you mentioned) the guide books was to rest; to not over exert yourself. The emphasis was very much on avoiding any exercise that involved getting hot, sweaty or fatigued.

At 20 you do as you are told by the Doctor, especially when all other advice says similar. I was physically fit, active and capable but the advice was to rest or risk further relapses. My mountain bike was sold, my exercise classes cancelled and my life as a ‘disabled person’ began.
By the time the advice began to properly change, my disability level had progressed - I couldn’t run now if I had to! The campaigns declaring that an active life is best are now (rightly) everywhere. It seems almost unbelievable that the opposite was true. Most of the people in my life, including my children, have no idea of who I really was before this.

That said, in the years before I was diagnosed, having children used to be on the ‘no’ list too. Medical advances are amazing but it can be heartbreaking to be caught in between them - a family friend with MS mourned for the children she was told not to have. She died, still relatively mobile, in her late 80’s.

@@Tara336 you are so right! Coping with other people is the worst thing. I would be rich if I got a pound, every time someone told me what I should do about it.

I totally agree. I went 3 years from CIS to second lesion and it felt like walking on thin ice. Even after the diagnosis I still feel like I am constantly living under The Sword Of Damocles. Never know what will happen next.

I get no real support and no guidance on what to do. Consultants want me to start DMTs but I’ve been waiting for over 18 months now, despite them knowing I am a single mum with 2 boys!

Just a moan, an in need of shoulders to cry on a bit - DS fell getting out of the shower tonight. His leg just gave way. He said he slipped on the set floor, but we both know he didn't.
Now I'm afraid he's going into flare, or just generally starting some deterioration.
Am just telling myself it's hospital day on Friday, and he is often always that bit worse the week of treatment.

I'd love a thread about MS. I've had it nearly 6 years and struggle every day 🥺

@PomBearWithoutHerOFRS I'm sorry to hear your husband fell, it's not a nice experience for either of you. It doesn't necessarily mean it's a relapse coming (or at least it doesn't in me) sometimes these things just happen. If he was having a hot shower then stepping out that could have caused it,my legs go like limp spaghetti sometimes if I get overheated, I'm fine a little while after. Hope all goes well at the hospital.

Same. Optic neuritis in my mid 20's, and second episode resulting in diagnosis (after MRI, lumbar puncture and evoked potentials test) in mid 40's