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

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.

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.

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

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

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.

@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.

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.

My mum had MS. Ruined our family life. I hope all of those who now have this are being treated with the new medications that they seem to have. Too late for her unfortunately. Vile disease.

I tried HBOT too but stopped going after I had a panic attack due to claustrophobia. I hadn't felt any benefits from it at that point and it was quite a long way to travel so I didn't try to persevere.

I've looked into stem cell treatment but it's very expensive, you have to go abroad for it, you lose your hair, you become very susceptible to infections, and I haven't read of anyone experiencing long lasting, sustained benefits- certainly not in anyone with secondary progressive ms. Just doesn't seem worth it on balance.

@secular39 yes I've tried it, I went for a few sessions, others there swore by it but as I'm.claustrophobuc it was a struggle (but nowhere near as bad as MRI) also the man that ran the centre gave me the creeps so I stopped going

Has anyone had HBOT therapy to manage their MS? I used to volunteer at a centre which specialised in treating adults and children with MS. A lot of the adults and children who came spoke of great benefits.

I have a friend with primary progressive MS. Her deterioration has just been horrific and since her diagnosis she has known that it will only ever get worse, its such a fucking cruel disease.

@SerendipityJane interesting, my scans looked like the lights on a Christmas tree. With a huge lesion on my cervical spine, which could have paralysed me. (Wish my neurologist hadn't told me that!) but I'm relatively ok.

Just wanted to say I have found this thread interesting, my father (aged 69) has just been diagnosed with “relapsing remitting MS” apparently this is very late to be diagnosed and we are all just trying to get out heads round what this means long term for him

Sorry to hear how many of you are affected.
I had optic neuritis 11 years ago. Had an MRI and neurology appointment but nothing else going on at that time.
Three months ago I started with pins and needles in one foot. It ran up to my leg and my foot goes completely numb at times. I’ve also stated with a burning in top of my foot and on the shin of the opposite leg. Additionally I’ve experienced some blurring in one eye (like a smudge that comes and goes). The optometrist said all was ok other than missing a couple of points on the field of vision test which is going to be repeated next week.
I have a GP appointment tomorrow to discuss but I’m worried about these symptoms.

Just a question out of curiosity.

I have a loved one with an Autoimmune disease (not MS). Luckily at the moment its laying dormant and not had flares for a while. But out of concerns for the future I read into clinical trials, and advancements in treatments. I found this quite comforting.

Stem cell therapy or transplants for severe Autoimmune conditions seems to have had good results in trials. Is this something that's ever been mentioned in the NHS? Or something anyone has researched into themselves?

As well there are treatments being developed to engineer t cells. I know massive amounts of money is being invested into this.

www.google.co.uk/amp/s/amp.theguardian.com/science/2022/sep/15/scientists-hail-autoimmune-disease-therapy-breakthrough-car-t-cell-lupus - this article was released today. Its for lupus, but a lot of treatments for Autoimmune conditions over lap.

I know this doesn't help now, but it does look like a lot of positive advancements in treatment are being made.

I was dx in 2017 after a lot of back & forth with gp,he kept saying it was my ears and fobbing me off.
Had mri for a back issue and they wanted to do head mri and spotted something, referred me to neuro but because it wasn't from the gp they bounced back the referral, had to fight with gp to make the referral!
Got to see neurologist and wasted appointment as they claimed they hadn't received scans (different hospital out of area) 3rd appointment the scan had been sat there the whole time,he was looking in wrong place!
Next appointment was a different neurologist and had to start all over again and she sent me for LP,which failed and had to go back and have it done via xray.
Dx was oct 2017.
On DMT now and at moment MS is steady,just issue with knees and looking like arthritis in kneecaps :(

I was diagnosed with MS at age 46 after an episode of transverse myelitis last year. Now on a DMT but struggling massively with fatigue. Hoping that things improve. Looking back I've probably had symptoms for a good 10 yrs or so, just never diagnosed.

I don't have MS but have known people with it. I do have a neurological involuntary movement disorder though, which has similarities to some of the types of movement problems MS can cause. Mine is a bit like Tourette's and Parkinson's disease combined, and was caused by a prescribed medication though so it was something that could have been avoided.

I totally understand how hard it can be having a neurological condition. While mine isn't neurodegenerative, it can go in an out of remission so it's not easy to live with. I am so sorry for all those who have live with these things 😢

@SerendipityJane I'm one of those that lights up like a Christmas tree with a couple large lesions for good luck. Myself and my neurologist started counting them once after an MRI we stopped at 25 as it was getting silly. BUT I am one of those where it is totally invisible to others. Although that's not to say it doesn't have some fun with me. It really is the luck of the draw isn't it

@CosmopolitanPlease yes absolutely, I am actually a southerner but, one parent is from up North (scots/irish) I am not a sun worshiper and tbh have always been the type to actively avoid it. I think its a combination of all the factors that cause it with a bit of bad luck thrown in.

Ladywaga. I think part of it is the possibility of side effects and her partner is pushing this POV. He works on the periphery of the health service and thinks he knows everything.
Secondly I think she would probably like another child. Perhaps ina couple of years.
And thirdly I think it's the ostrich effect. She has seen my mum and aunt go from able bodied to, in my mum's case, very severe disability and physical deformation. She gets round her care home in a motorised wheelchair but needs two carers to move her, help feed her, bathe her etc. She was very glamorous and I think the thought of going the same way is too difficult to contemplate when she is well and healthy and a young mum.