Sources of possible support - UK

[Beatirce]

Since my partner was diagnosed with peripheral neuropathy in 2022, his condition has worsened and he's lost much of his mobility. He's not receiving any treatment - doctor/hospital aren't interested. He need some advice (and possibly an assessment?) about what he can do to to keep him as mobile as he can be. His legs are very weak and he can't control them. He hangs on to furniture as he moves around the house, and pulls himself upstairs using handrails. He uses a rollator outside to balance as he can't walk far with a walking stick. Any advice or suggestions on where he could look to for help and support?

[Esperanto]

Hi Beatrice, it's a problem of PN that you get into a vicious circle. Due to the worsened physical situation, it becomes more difficult to do the necessary exercise, which will make your symptoms even worse. Medication indeed only consists of pain management....

Still, at least you should try to put the PN to a standstill to prevent further irreparable damage. If you get there early, at least partly one can repair the damage . You don't do that by hearing every six months through an EMG that more nerve pathways have died. If you don't know the cause, then finding it is the highest priority. I understand from previous posts that there is chronic lymphocytic leukaemia so there may be a complication from the treatment. CLL cells can spread to the nerves, an autoimmune reaction, chemotherapy, immunotherapies, a deficiency or overdose of Vitamin B6, which can occur very quickly at current doses of multivitamins and B complex as well, they can all be causatives of the PN. If there is a little more clarity, you may be able to make a plan of action with (a more specialised) neurologist. 🍀

[Beatirce in reply to Esperanto]

@Esperanto, Thank you. Yes, my partner has CLL as well (on Watch & Wait). The challenge is persuading doctors to take an interest.... once they've diagnosed PN, they seem to lose interest (at least here in the UK)