What to do about unhelpful MS Nurse Team?

Everyday living
1

Hi guys. I’m feeling pretty exhausted right now.

I’ll keep it as brief as possible.

Backstory
I caught a throat infection in Oct 24, where I was hospitalised for 2 nights to reduce swelling under my vocal cords. I couldn’t eat, drink or even swallow my own saliva (spitting in a cup, sorry TMI).

Whilst recovery after being discharged, I got out of bed one day too quickly and instantly felt a wave of intense dizziness, disorientation, light-headed as if I were going to pass out, off-balance and just a constant feeling of pressure in my head. Long story short it’s April 2025 and I still experience this, some days better than others. My life has been flipped upside down, simple things like, walking, taking a shower, preparing food is exhausting. My body is working extra hard just to do the bare minimum.

Since Nov 2024 it’s been back and forth with GP, MS Nurse team to beg them for an MRI to see me, check me etc. I had an MRI in Feb 2025 that shows a new lesion on the lower part of my brain. And I can’t see a neuro till Sept 2025!!(granted not their fault regarding NHS system)

Had to pay private neurologist and she suspects I’ve had a clinical and physical relapse and to speak to them about starting DMTs.

Everytime I call my MS Team though. I feel a sense of dread. They seem so unhelpful. You know when you hate going into work is how I hate having to call my MS team. I thought nurses were caring, but I get 0 sympathy and “we can’t do xyz, speak to your GP”. I don’t actually feel like they’re there for me. Don’t even get me started on my workplace either…

How do I voice my concerns? Is it possible to switch Ms Nurse Team or am I stuck purely based on my geographical location.

My MS is RRMS (first relapse in 2016, officially diagnosis 2019 and not on any DMTs)

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That sounds grim – I’m really sorry. I’m afraid I don’t think there’s much for it but it to keep at them - write. phone leave messages whatever. look, I’m in a similar boat with a different medical problem at the moment snd it’s like firing endless messages into the void and it’s extremely disheartening – I know. But I don’t have a better idea. Someone on here recently reported getting the GP to write. Is that an option?

3

Hey Alison100. Thanks for commenting, really appreciate it. I could give that a go to be fair,‘it’s worth a shot. Thank you!

1 Like
4

Maybe you could ask to speak with someone who handles patient care or a patient advocate, and see if you can be reassigned to another team. Also, keep your GP in the loop about how you’re feeling.