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.

@CosmopolitanPlease I've not heard that theory before. But I find it difficult to believe that actual physical lesions on your brain and spinal cord can be psychological.

A mere thought can lift your arm and swing your fist into the wall, or instantly double your heart rate and send adrenaline tingles through your body, or make your mouth fill with saliva. Over time, psychological factors can absolutely cause visible effects… the brain is very powerful.

@Tara336 how interesting that we have a similar story - my father was Scottish, although I didn't have any relatives with ms. Along with the genetic hypothesis it's also thought that vitamin d deficiency contributes to ms, and as we make it from sunlight those in the north make less. I take a high dose daily now and get in the sun regularly.

@Toddlerteaplease the lesions and demyelinations are absolutely real and not psychosomatic, but the theory is that stress - and how we deal with it - can contribute to the body developing ms, and also other autoimmune illnesses.

@Nsky62 @mamabear715 sorry to hear about your health problems too. Life's bloody unfair sometimes isn't it.

My father was Scottish too. Of course stress may exacerbate symptoms ,but it does not cause demyelination which has no psychological element .

My daughter is getting results next week after an episode of optic neuritis. My mum is very severely disabled with it and needs care home resources. Her sister, my aunt has it and is pretty much housebound.
I'm so worried as I see how it has ravaged my mum's body. Thankfully her mind is sharp.
I'm very frightened for my daughter but trying not to show it.

That's so sad. How long did it take for your mum and aunt to get to where they're at now ?

Fingers crossed for your daughter. Not everyone ends up in a really bad way. For some people it's mild.

#Ladywaga - my mum and auntie both have late onset progressive which I think is secondary progressive now for my mum at least. She started at about 60 but had ON at 41.
She's now 78.
My auntie was about 65 and is now 74. She's never had any other symptoms and is still living at home but with a lot of support.
My daughter is 29 and had just returned to work after mat leave.
She's ignoring it which I find good because her initial reaction was utter despair but bad because I think she will refuse DMTs.

Ps. Neither my auntie or mum have had DMTs which is why I'm hoping my daughter will have them.

I see. Why do you think your daughter won't have a DMT ? Does she think there's no point ? I was also diagnosed after Optic neuritis when I was 30. I'm 36 now and don't really have any issues aside from fatigue. I find it a bizarre concept that I should become seriously unwell. I don't know anyone with MS though. I have been taking medication, but stopped to have a couple of kids. I'm done now and I'm going to go in hard asap. From my Scans it seems quite stable at the moment.

I don't know what that means for the future

The degree of disability presented with MS has little correlation to the damage to the myelin. One patient can have an almost imperceptible lesion (and MS is defined by more than one instance of demyelination separated by time and space) and be bedridden. Another can light up like a christmas tree and have no discernible disability.

There's also the sexual aspect. MS is twice as prevalent in Original Flavour women as it is in men.

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.

@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.

@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

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 😢

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 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 :(

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.

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 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

@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.

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.

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.

@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

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.

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.