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

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.

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

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

#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.

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.

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.

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

@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.

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.

@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.

I feel for you all, diagnosis Parkinson’s or mimic on Thursday, symptoms for a few months, the unexpected weakness threw me.
luckily early retirement, unexpected st 60, coping tho

I've been feeling a bit sorry for myself re arthritis..nothing compared to you - hugs to you all.. it sounds terrible. :-(

@CosmopolitanPlease i seem to have fatigue worse in the winter although that's not to say it doesn't raise its head in summer. When it's very hot my legs seem to go like limp spaghetti. I do laugh now but at the time it wasn't funny when we were walking in single file one evening at the beach and DH was chatting away and I was laying on the floor because my legs had gone, he was oblivious until a lady shouted to him and pointed to me on the floor in a heap.

I do believe your right about triggers for MS I experienced trauma in childhood, an emotionally abusive father etc. Scots Irish heritage with one other distant relative on that side having MS.

I had a serious car accident, my father's emotional abuse escalated and I was in a job I was utterly miserable in, that was when the symptoms started. They went away after a while and then usual story of odd stuff happening with no explanation.

I then went through another period of extreme stress and was eventually diagnosed. It is possible I had glandular fever as a teen, I have a vague recollection of being diagnosed but was definitely in contact with someone who had it as I remember that clearly.

@Tara336 my spasticity is much, much worse in cold weather, but in hot (especially humid) weather my fatigue and heaviness are worse - I'm a bit like Goldilocks when it comes to temperature!

@PastMyBestBeforeDate 😂 if I er, straddle dh he has to guide my 'bad leg' over to avoid testicular assaults

I've had ms long enough not to take much notice of news of new treatments or cures. Does anyone remember the ccsvi debacle? I was convinced that was to be the answer to all my problems. Anyway, most new treatments seem to target relapses and don't work on progressive ms. I remain cautiously hopeful but pragmatic.

@Toddlerteaplease I understand what you're saying. However there is some weight in the theory that ms may also have a psychological element to it. I personally believe there are several factors that can come together and result in ms including; childhood traumas (people with ACE scores- adverse childhood experiences- more likely to develop certain diseases including ms), a genetic component (more prevalent in northern hemisphere, eg Scotland has higher rate), environmental factors including smoking, our standard western diets, and how we deal with chronic stress and adversity. If you're interested in the last one I'd recommend reading Gabor Mate or listening to his latest interview with Rangan Chatterjee where he mentions ms several times. podcasts.apple.com/gb/podcast/feel-better-live-more-with-dr-rangan-chatterjee/id1333552422?i=1000579192359

I had traumas in my childhood, witnessing domestic abuse, rancorous divorce of my parents, an emotionally abusive father, mother leaving me for new man. I was encouraged to repress my emotions around these issues and indeed still don't talk about them with dm (df now dead). I smoked, drank, sniffed glue, slept around as young teenager. I repressed anger over relationships with my family and later my in-laws, never addressing hurtful behaviour of others but instead going over and over things in my mind, provoking stress hormones to flood my brain. Always worrying I wasn't doing enough or the right thing, ruminating constantly. Before my first ms relapse I experienced a period of enormous stress which I didn't share with anyone.

Since realising what my mindset was doing to myself physically I've made efforts to change. I practice mindfulness and if I catch myself ruminating I stop. I forgive myself for how I behaved in the past. I've cut out toxic people and I focus on the positive. I believe the damage to my body is done but that I can mitigate future damage.

If anyone's interested in these ideas Jeff Rediger's book 'Cured' expands on them as do Gabor Mate's books and Terry Wahl's 'Wahl's Protocol'.

@SerendipityJane very interesting!

@CosmopolitanPlease I thought I was alone but yes, my legs get stiffer when I'm 'excited'! I have to be very careful around dh's balls just in case I accidentally wallop him.

@CosmopolitanPlease I have found the stiffness only seems to happen as the weather turns colder, if I can keep warm.or apply heat I definitely feel better. I am one of those weird MSers who improves in summer and suffers all through winter. My neuro says everyone feels better when it's warmer but it's not my imagination.

@SerendipityJane that's exciting! Let's hope it passes into the mainstream quickly!

Some news.

www.theguardian.com/science/2022/sep/15/scientists-hail-autoimmune-disease-therapy-breakthrough-car-t-cell-lupus

I was diagnosed with MS very late in life at the age of 54 but had never had any symptoms beforehand. I did have glandular fever at the age of 21 however. The lesions on my spine effect my legs and cause severe stiffness and spasticity. I take Gabapentin 16 mgs a day but it doesn't help much. I would love to try Sativex also. I've had MS for 12 years now and the initial MRI also showed I had a benign brain tumour which is monitored yearly. I was off work (teaching in a secondary school) for nearly a year while I regained my mobility. I would have a few attacks but then my legs would lose the stiffness after a few months and I would be OK again. My last attack in 2020 has left me with permanent spasticity and is a real pain.

I've had ms for nearly 20 years now, I'm 50. I have to use a rollator to walk or a scooter. I was diagnosed after developing double vision, foot drop, numbness on one side of my body. Made almost full recovery and returned to work for about 5 years until I began to experience numbness, trouble walking etc again and was diagnosed as secondary progressive aged around 40. I've never qualified for disease modifying drugs as I didn't experience a lot of relapses.

My main issues are stiffness, spasms and general lack of motivation. I hate that I can't go out the house alone. I hate that ms affects my sex life with my wonderful dh (my leg stiffness is off the chart when I'm excited in any way). I badly want to try sativex but am fobbed off by neuro at every attempt. I'm currently trialling tizanidine having tried and rejected several other spasticity meds as they made my legs too heavy to walk or made my head feel fuzzy.

I feel better when I stretch and exercise regularly, eat a strict healthy diet and don't smoke cannabis (I don't ever smoke tobacco) but really struggle to stay on track. Vaping cannabis doesn't have the same ill effects which is why I want to try sativex.

I'd be very interested to hear what others find helpful for stiffness? I take a high strength magnesium but not convinced it makes any difference.

He has a monthly infusion of tysabri (and some other meds at home in tablets) They do it on the same ward as it's the children's ward, and basically it is chemo - chemo therapy just means "treatment with chemicals/drugs" and it just gets people to understand how serious his condition is. We do tend to say "just like chemo but for MS" so people know he hasn't got cancer, but when we just said " treatment" or similar, they just didn't get it 😪aandaand in many ways it's just as life limiting in it's effect on him.
Plus, in a way, that day, I'd had enough of their shit! It followed a long period of fuck ups on their part, one of which could have actually done him serious damage and put him back in hospital, and I was past caring 😑

CALPOL???? For MS????

Also Matt I be rude and ask why he was on Chemo? Does he also have cancer? I'm so sorry x

I don't think it is linked, I just have both conditions

@TightDiamondShoes, you're not a failure! You're obviously suffering and need a diagnosis so you can get help. This isn't your fault. 💐