Peripheral neuropathy

Thank you all very much. Best wishes to those with similar problems.

I find the consultant a bit useless on the "how to keep yourself from getting worse" side.

Mine is idiopathic (the PN not the consultant) - he doesn't know why I have it. I believe mine is to do with back issues related to my IBS. If I manage the IBS, I don't get back pain, and the neuropathy seems to remain stable. But who knows

My son has this, but not through chemotherapy
I bought him some sketcher type slipons yesterday,as his slippers were very soft and backless,he can walk a bit better in these as he can at least feel them around his feet
He has done a lof of heavy lifting in his work in the past and was told it was due to this,but had no help from his Dr,was supposed to have had cortisone injections about 3 years ago, never happened
I believe it is Vit B12 which helps with numbness and tingling in feet
He does have other health problems too

Always take a stick when walking outside - falling and fracturing something can be a life-changing experience.

Sorry, that was very selfish. I hope all those effected have it mild enough to allow them to drive

I didn't know about telling the DVLA either Deedaa. I have been looking it up and, of course, you should tell your insurance company too.

It seems they will want to know whether your consultant thinks you are ok to drive. I wonder just how long it will take to get that information. This seems such a worry. I would be lost without my car but hopefully my neuropathy is mild enough to allow me to drive.

Deeda I'm glad you were both ok. Yes it is very serious.

DH had peripheral neuropathy caused by his chemotherapy. He didn't have too many problems walking, although he usually used a stick when he was outside. He did however nearly kill us the last time he drove the car. He insisted on driving because it was snowing and he didn't trust me in snow. The car accelerated through a red light but fortunately there was no traffic because of the weather and we didn't hit anything.He was adamant the accelerator had jammed. I spent £200 having it checked and they couldn't find anything wrong and two and a half years later it's never done it again. I'm certain now that he had his foot on the accelerator not the brake, but couldn't feel what he was doing because of the PN. He never drove again and I never had to tell him what I thought had happened. I later discovered that we should have notified the DVLA about the PN.

A friend is having exactly the same symptoms for the same reason as you Madwoman. The neurapathy is in her feet and legs. She hopes that, as she hasn't had chemo for the past three months, it won't progress further.
For another reason, Sjogren's syndrome, I have developed peripheral neuropathy in my feet. It has moved further in the past few months, since I noticed the odd sensation in one toe. Just hope it doesn't go further. I'll look for that Facebook group too.

Thank you everyone

Thank you Bluebellwould I will certainly talking to my team

Yeah, my balance is useless. Always have to hold onto something. Plus severe swelling and numbness. Hands and feet

My DH was also told that his peripheral neuropathy caused by chemotherapy was permanent. Some days were worse than others, but helped a little by taking Pregabalin. Being male he had a selection of sensible, supportive footwear, but often took a stick when going for a loan walk.
I wish you well, as he found the condition very frustrating.

There is a Peripheral neuropathy group on FaceBook that you might find useful to join Madwoman. I'm sure someone their would have experience of specialist shoes.

I have it but not because of chemo. I found the neurologist pretty useless when I asked if there was anything I could do to help myself. I wonder if you have problems with your balance. If you are able to go for a walk walking poles are great and help you maintain your posture too.

Good luck.

My husband had the same after chemo. He was prescribed large doses of a B vitamin, not sure which one but I think it was B12 or B6. You really should be getting help from your oncology team, as this is a serious long lasting damage from chemo. Don’t take no for an answer. It did help him I think.

I was told the damage is permanent, but I see my Oncologist again soon so I will see if I can get any help. Thank you

Have you spoken to your GP at all? Perhaps a referral to an orthotist could help. There are many braces, insoles, etc that can help with problems such as yours but I feel it needs a specialist assessment to get help that’s right for you.