u/BriefGuava1188

So I'm still trying to get a diagnosis, in combination with the NHS and privately. My history is complex, as I have MS (20+ years), have taken various disease modifying therapies and currently classed as "stable" after MRIs in the back end of 2025.

But my burning skin is just getting stronger and more widespread. I can't remember the last time I was comfortable or had a good night's sleep. Clothes hurt and I struggle to sit down. I'm also conversely freezing cold (despite skin feeling) but adding layers doesn't cut it as I can't stand the allodynia. I am utterly at my wits end and very worried about my mental health. I've been off work since December.

I'm having a skin nerve biopsy in early May (privately), have a pain clinic appointment on the NHS too. My GP has been great but there is a limit to how much they can help. My MS team are supportive but they don't see this as their problem (despite being a patient at Queen's Square).

Can anyone suggest anything to help?