Question on PN progression...

[Kark]

I've had unknown cause PN in my feet( mostly numbness and burning in soles) for a year now...does it always progress or can it simply stop at that level? Thank you in advance for your experience with this.

[Karjade]

I was diagnosed with peripheral neuropaths seven years ago and it was just in my big toe. It has now progressed to both feet, hands and legs with tingling, burning and numbness. I have been to three hospitals and I am now under John Radcliffe in Oxford and awaiting results of many blood tests. Hoping you have seen a Neurologist as that is the first step. Good luck.

[Kark in reply to Karjade]

Yes, I do have a Neurologist. Do you also have small nerve Neuropathy by any chance.? I was just tested for that and it came back negative. I of course did test for long nerve.

[Karjade in reply to Kark]

I was told at the beginning that I had small fibre peripheral neuropathy but tests came back negative! I was just given a low dose of Gabapentin and they discharged me. A few years later when it had progressed I went back to my doctor and asked him to refer me to another hospital which he did. After many tests at Leicester hospital I was then diagnosed with Anti-MAG peripheral neuropathy which is a very rare autoimmune disease but they did not know how to treat it. I saw three Neurologists at this hospital and the third one seemed to know more than the other two. She authorised lots of blood tests which I am awaiting results. In the meantime I did my own research and found a Neurologist in John Radcliffe who knew more about Anti-MAG neuropathy and I managed to get an appointment with them. I had blood tests there to test if I have Paraproteins in my blood and if I have I can have infusions to prevent it progressing. The point I am getting at is never give up and learn as much as you can about it so you can ask lots of questions when you go to these Neurologists. There are many different types of neuropathy and, unfortunately, mine is very rare and hard to treat. Hope this helps.

[Kark in reply to Karjade]

Karjade. Yes it helps very much and thank you. I actually was the one who suggested to be tested for small nerve. I did read at one point about infusion therapy. I hope it is effective for you. On my part I am trying to keep my feet as active as possible by going to the gym 3 times a week, playing a little pickelball and using a vibration platform for my feet once or twice a day. I also wonder if finding a good deep message foot therapist would help. Have you tried something like deep message? Any experience with these types of things?Thanks.

[ziggypiggy in reply to Kark]

Cymbalts worked wonders for my burning feet.