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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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:
CosyCoffee · 14/02/2023 13:46

@ellie09 have you had your b12 tested? Your symptoms sound very like my relative's who had b12 deficiency. If so it is easily treated, my relative is now back to normal.

Roselilly36 · 14/02/2023 14:06

@CosyCoffee yes MS nurses, my first one, tbf was very good, very supportive & helpful, she left. I think I am on MS a nurse number 4 now, the last contact was a very short telephone call, blink and you missed it sort of thing. I like you tend to just get on with things, I was diagnosed 11 years ago.

FatSealSmugSoup · 14/02/2023 14:17

Mine is great (so far). She’s just phoned with paperwork stuff so we don’t need to rehash that tomorrow when I see her.

ellie09 · 14/02/2023 17:39

CosyCoffee · 14/02/2023 13:46

@ellie09 have you had your b12 tested? Your symptoms sound very like my relative's who had b12 deficiency. If so it is easily treated, my relative is now back to normal.

Full bloods done, no vitamin B12 deficiency but I do have a slight folic acid one. Its been an ongoing issue now for over a year. No amount of supplement seems to rectify it

Tara336 · 16/02/2023 18:31

I'm on my 4th or 5th MS Nurse, I've lost count, the first two were amazing but now (especially since COVID) they are worse then useless, if you call for help it's ignored they never return your calls so I don't bother anymore, same as everyone else I just get on with it. I used to have an annual check up with a neurologist but again that's stopped so there is no where to turn to for help. My MS is very active right now with new weird and wonderful symptoms but tbh even if you vould speak to someone here isn't much they will do other then tell you to rest or they offer steroids which I prefer not to do as I've been told the side affects are horrible

terricawisner · 01/08/2023 09:09

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

ClumpingBambooIsALie · 01/08/2023 12:13

Reported for spam.

CosyCoffee · 01/08/2023 12:16

Yes I could taste spam in that post too. Vultures Angry

CareerChange24 · 30/06/2025 04:04

TightDiamondShoes · 16/09/2022 16:39

Awaiting diagnosis following a spectacular “relapse” last month when a locum GP and optician out 2+2 together and sent me straight for a CT.

There have been incidents over the years and I’ve had multiple MRIs which show a metric shit ton of lesions - but the usual diagnosis is “fat”.

tbh, until I lost my sight last month I was berating myself for being fat/lazy/useless etc.

im not sleeping well right now because tbh I’m expecting the neurologist next week to say “ah yes, youre fat - that’s why you have diplopia, TN, dozens of lesions and can’t move”.

How did you go on the end??

CareerChange24 · 30/06/2025 04:17

Bonkerz · 17/09/2022 20:54

Not diagnosed but waiting for MRI. Most things been ruled out up to now.
Back history......

5 years ago I was dx with pernicious aneamia……. Also nerve damage to both hands. Left side worse. I receive B12 injections every 8 weeks.
3 years ago I was dx with trigeminal neuralgia.
May 2022 I started having issues with breathing. Heart issues were ruled out and I’m on asthma inhalers but still feel like I have a band squeezing me every day and that I can’t take a deep breath.
June 2022 I started falling over. 3 times I fell and it was like I had an epidural and couldn’t feel my legs to get off floor for a few hours.
Since then I’m now using a crutch to walk and climbing stairs is very difficult. I struggle to lift my legs as they feel
Like my feet are in concrete shoes.
My arms don’t lift and I don’t have strength so can’t lift a kettle etc. for me walking just feels like my legs are on strings and made of jelly.

initially doctor referred me to rheumatologist and did numerous blood tests. Ruled out lupus and lots of other things.
I’ve now been referred to a neurologist for an MRI.
I’m on gabapentin for nerve pain. I’m constantly getting burning pains in my toes and fingers and pins and needles in my feet and then the numbness is quite scary as it happens when I walk. I’ve become housebound.
My mouth won’t open wide either and eating sometimes feels like I’m choking. I’ve lost just over 2 stone since June.
I feel like I’m going mad. I can’t even climb into the bath for a shower. My kids are helping me dress and cook and clean.

I was due back to work but am having to delay my return due to being unable to move around safely.

Before all this started I was going to shows in London using tubes etc and having weekends away clubbing (literally FEB 2022) and now I'm 90% housebound.

Can I ask if you went on to be diagnosed? I’m having the same symptoms as you have stated here, I’ve paid for a few private tests, but I’m too ashamed to go to my GP as I think they’ll think I’m crazy. I feel it to have such a number of issues. I hope you are well

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