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Family member in recess - life with primary-progressive MS

5 replies

Vallmo47 · 06/12/2025 09:17

Looking for honest opinions and advice and really appreciate input especially from people who know or knew someone living with this awful condition.

Family member with primary-progressive MS, diagnosed 13 years ago. Went from having some trouble with one leg, a slight limp, to being diagnosed with MS. She was open with the fact that this condition would only get progressively worse until she’d be unable to use her limbs. It was hard to imagine at the time.
Fast Forward to her life until the other day- in wheelchair, unable to use her legs (dead weight), really struggling to use her fingers and one arm more or less also dead weight.
No pain involved for her luckily and we had got oddly used to her new way of living - very tragic obviously but we were trying to keep it light for her.

Family member took a serious turn Thursday afternoon, began vomiting, one side of body became paralysed and couldn’t string coherent sentences together.
A&E called, was advised waiting time for ambulance was 4+ hours so family members scrambled together and managed to get her there.

Cat scan and MRI done but awaiting results and staff not confident they got the images they needed.
Initially thought to be MS flare up, but now that’s been discounted.
I believe stroke has also been ruled out.
Family member clearly very unwell but able to recite quotes from favourite tv shows.

In terms of the condition, does anyone have any knowledge or personal experience (sorry if you do) to make me understand?
As awful as it is, we already know this isn’t going to be good news, so we kind of just want to know … what to expect for life afterwards if there is chance of that.

Thank you

OP posts:
ladyamy · 06/12/2025 11:50

I’m sorry I can’t help, but I’m diagnosed with R/T MS and I can’t imagine how hard PP must be. Sending love.

Vallmo47 · 06/12/2025 12:01

Thank you. 🙏
Yes, this is just heartbreaking and we haven’t had an update since last night so we are just … helplessly waiting.

I Wish you well. 🥰

OP posts:
MysticFelineScream · 06/12/2025 12:58

My husband has MS and reacts really badly to any kind of virus. If he even gets a cold where his temperature rises his immune system goes into overdrive and his legs stop working completely and he really struggles with everything else. When he got covid he had to get antivirals really quickly as it would have been worse.

ladyamy · 06/12/2025 17:17

Vallmo47 · 06/12/2025 12:01

Thank you. 🙏
Yes, this is just heartbreaking and we haven’t had an update since last night so we are just … helplessly waiting.

I Wish you well. 🥰

Thank you ❤️

Vallmo47 · 06/12/2025 19:58

Thank you both.
By some kind of miracle, she’s improved a bit today and we now await the MRI results in week. 🙏

OP posts:
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