Peripheral neuralgia

[MaggieSylvie]

I saw the neurologist yesterday and he told me that what I have is common (10% of people feel as if they are wearing socks, have burning toes, etc), but the name of the condition is longer than that town in Wales. It means that no-one knows what causes it. So now I have another condition that "nobody knows" to add to fibromyalgia and triple-negative MDS/MPN. WHY? I'm not a regular "sicky". Oh and I still don't know what has caused my compression fractures either, no DEXA scan having been done yet. I'm just a joke. The neurologist told me I have the balance of a ballet dancer. He suggested I take amitriptyline. I resist that for several reasons, and I do enjoy not having cold feet any more.

[JigFettler]

I have neuropathy in both feet. Started before my CLL diagnosis. And has not developed further since Chemo. I fancy is easing - as I am in remission. It seems to dull the sensation of touch. Fortunately no pain etc.

Jig

[MaggieSylvie in reply to JigFettler]

My partner has peripheral neuropathy in both feet because he is a type 1 diabetic and has had both great toes amputated. His feet can feel nothing and his fingers are not sensitive either, so he can't read braille.

My neuropathy started four or five years ago and I wasn't diagnosed with MDS/MPN until 18 months ago, but who knows when it started. I don't have pain either, except now and again a hot stabbing in a toe. What started in the soles of my feet is now all over my feet and I have sensation in most places. I doubt the two are related, but again, who knows? Maggie

[2003UK Champion]

Yes, all the things I have got wrong with me since my CLL diagnosis, I will stop at, my numb toes arrived and stayed with my reoccurring shingles and my compression fractures are caused by osteoporosis. My balance is terrible. as for medical advice I am useless at that as well.

What this site does do is to support each other, so please take care of yourself and stay safe, that is the most important thing, and if you would like to talk to someone the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Please do let us know how you get on and decide.