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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

160 replies

SatInTheCorner · 16/09/2022 00:31

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.

OP posts:
zeerecords · 17/09/2022 21:26

I would like to learn more if you don't mind. A close family friend was diagnosed with MS at a young age and is very private so I don't feel comfortable asking questions but I would like to know how it will affect there life's (the family friends are a couple) moving forward. She takes injections three times a week and is in what she calls remission. Is this to help reduce chances of a flare up? Are there different types of MS?

Also as a separate note my SIL has a lot of the symptoms described but also has a lot of other health issues. She's had a recent MRI and MS hasn't ever been mentioned but does it always show up on a MRI?

NeckFanInSoftPlay · 17/09/2022 21:29

I'm a single parent (widow) with progressive MS (with relapses) and have a young child with Autism. It's hell on a stick and my poor child is going to end up a young carer I can see it now...

My mobility is bad. I need a mobility scooter but cannot afford one.
Sick to death of the bladder issues and permanently feeling desperate to go but rarely being able to actually get any urine out. Also the inability to regulate heat is debilitating, my god. I also have Hyperhidrosis of the scalp & face, so it's a bloody horrendous combination, leaving me housebound on hot/humid days. I can literally have a bucket under my face & hair for it to drip into. It got so bad during the heatwave that I had to spend all day with a cold towel covering my face as the sweat was going in my eyes.

I needn't bother expressing how badly the fatigue breaks me as you all already know, right?!

nowandnever · 17/09/2022 21:46

I'm in my forties and have a recent diagnosis after an episode of impaired vision, and episode of leg heaviness 5 years ago. I'm waiting to start a DMD but am well currently with no other symptoms.

It's an incredibly variable disease which is what makes it such a bugger to deal with. There are people living into their seventies and eighties and so on with minimal symptoms, so not everyone ends up very disabled or wheelchair/bed bound.

I've buried myself in research, some of it scary, some of it encouraging - and it's clear that lifestyle modifications especially exercise make a huge difference to progression and disability.

I recommend the Overcoming MS website to everyone. Even if you don't subscribe to the difference an altered diet can make, the positivity and encouraging stories (and an undeniably healthy lifestyle) can't hurt!

Toddlerteaplease · 18/09/2022 03:31

@NeckFanInSoftPlay you may be able to get a grant for a scooter from your local branch of the MS society. My local one does this.

Toddlerteaplease · 18/09/2022 03:32

And have you discussed intermittent self catheterisation with your nurse? That would massively help your bladder issue.

Toddlerteaplease · 18/09/2022 03:41

This reply has been deleted

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PomBearWithoutHerOFRS · 18/09/2022 04:30

@NeckFanInSoftPlay
I'm posting on a kindle, so it would take too long for the whole sorry tale about the school. If I get chance will post from pc so I can type,but for now, two incidents...
The truancy/attendance officer knocked on the door (this was several months post diagnosis, school knew why he was off) and very abruptly said "can you explain why DS isn't in school today" I replied "because we're going to the hospital (40 miles away) for his chemo in ten mimutes"
Tbf, she was mortified that DS was on her list and was actually really nice person, but it happened again and again - we were on first name terms with her in the end.
The person who phoned to ask why he was absent said "can't you just give him some Calpol and send him in?"w/o
These ended up being minor compared to some of their shit. Still not 1 00% sorted even now...

TightDiamondShoes · 18/09/2022 07:32

@NeckFanInSoftPlay wow! I had no idea hyperhidrosos was linked. I had a terrible time with that 8 years ago just before I “lost my legs” and it was humiliating. I’d get out of the shower and the sweat would literally run down one side of my body.

Torturedsoul · 18/09/2022 07:53

I'm waiting for MRI results to rule out MS at the mo. I have had a host of weird and wonderful symptoms over the years and I broke down in the Dr's surgery and begged to be taken seriously. At this stage, I am hoping it IS MS so I at least know and can have a plan and some answers. The not knowing and feeling like I am going mad is soul destroying.

TightDiamondShoes · 18/09/2022 08:03

@Torturedsoul i hear you. I’ve been in and out of MRI scans for the last 8 years with a variety of “very MS” symptoms and tbh either my eyesight HAS failed because I’m fat/stressed 🙄 - OR it’s time for a diagnosis (of something!).

I’ve got a neurology appt. This week and I’m praying that they apply the McDonald criteria otherwise I’ll probably lose my shit cry and ask “how many disseminations in space and time are you wanting because you’ve medical evidence of at least 3 now”.

I think I’ve probably shot myself in the foot by being “too stoical” and waiting to see what happens “tomorrow” rather than presenting myself at a&e.

although my eyesight is mostly back to normal now (thank you steroids), I’m still exhausted and in a lot of pain.

I only went back to FT work in April after nearly 10 years of being home with the children and I frankly feel like a total failure.

Torturedsoul · 18/09/2022 08:12

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

NeckFanInSoftPlay · 18/09/2022 15:36

TightDiamondShoes · 18/09/2022 07:32

@NeckFanInSoftPlay wow! I had no idea hyperhidrosos was linked. I had a terrible time with that 8 years ago just before I “lost my legs” and it was humiliating. I’d get out of the shower and the sweat would literally run down one side of my body.

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

NeckFanInSoftPlay · 18/09/2022 15:37

PomBearWithoutHerOFRS · 18/09/2022 04:30

@NeckFanInSoftPlay
I'm posting on a kindle, so it would take too long for the whole sorry tale about the school. If I get chance will post from pc so I can type,but for now, two incidents...
The truancy/attendance officer knocked on the door (this was several months post diagnosis, school knew why he was off) and very abruptly said "can you explain why DS isn't in school today" I replied "because we're going to the hospital (40 miles away) for his chemo in ten mimutes"
Tbf, she was mortified that DS was on her list and was actually really nice person, but it happened again and again - we were on first name terms with her in the end.
The person who phoned to ask why he was absent said "can't you just give him some Calpol and send him in?"w/o
These ended up being minor compared to some of their shit. Still not 1 00% sorted even now...

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

PomBearWithoutHerOFRS · 19/09/2022 04:13

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 😑

CosmopolitanPlease · 20/09/2022 09:40

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.

HarrietPierce · 20/09/2022 11:43

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.

Tara336 · 20/09/2022 16:10

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

Tara336 · 20/09/2022 16:13

@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.

PastMyBestBeforeDate · 20/09/2022 16:22

@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.

PastMyBestBeforeDate · 20/09/2022 16:24

@SerendipityJane very interesting!

CosmopolitanPlease · 21/09/2022 10:42

@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'.

Tara336 · 21/09/2022 12:38

@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.

mamabear715 · 21/09/2022 12:43

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

Nsky62 · 21/09/2022 13:05

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