Hereditary Neuropathy

I was diagnosed with PN 10 years ago. It initially started in my hands with tingling and numbness in my index fingers and thumbs. After having the carpel tunnel operation three times on each hand it was decided that I should see a neurologist who after several tests diagnosed hereditary neuropathy. Since then it has travelled up both legs and both arms together with numb buttocks. Recently it has travelled to my neck and lower jaw. I take pregabelin two times per day and amitriptyline at night. Some nights it is almost unbearable with my legs tinkling with a burning sensation and the same in my arms. I can't seem to find out what the future prognosis is. I know there is no cure. Will it affect the organs eventually?

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  • I was diagnosed with PN 11 years ago with the same symptoms as yourself, in my fingers. I had nerve conduction tests which showed the PN in my feet and hands. Now I too have altered sensation in my hands and legs up to my hips. You haven't mentioned having balance problems. I noticed 5 years ago that I was finding it more difficult to walk in darkness and that has got worse. Also my balance is not as good as it used to be or should be. The neurologist said this is due to loss of proprioception in my feet.

    PN does not affect internal organs. I don't know anyone in my family who has had PN so it is not hereditary in my family.

    I also experience the horrible stabbing burning nerve pain but because I don't get it every day I don't take the medication you take. I was prescribed it when I asked for a pain relief but you have to take it every day for it to work.. I discovered that eating certain foods was triggering the pain and if I avoid them I don't get it as often. The main problems for me are citric acid, sulphites and maize starch which you get in lots of processed foods, tins, packets, sauces, cakes, biscuits. I try and eat fresh food and read all the ingredients on packaging. This helps me.

    I think you need you speak to a neurologist and get some reassurance. My experience of neurologists has not been good and I struggled to find one who was patient friendly. There might not be a cure but you shouldn't feel fearful about the future. I hope things improve for you.

  • Hello Viv Thank you for your reply. It is very reassuring to know someone else can identify similar symptoms - not that I would wish this condition on anyone. Yes I did forget to mention balance problems but did not associate it with the hereditary neuropathy. It really is reassuring that the internal organs will not be affected. The medication I take reduces the pain level and enables me to live a full life. If I have been particularly energetic during the day I pay for it at night. Even so, I try not to let this inhibit my lifestyle too much. Standing for any length of time causes more pain. I have very little grip in my hands which can be quite frustrating. I take on board your comments about some foods. I generally try to eat mostly fresh foods and I love most fruits. Grapefruits and oranges are my favourite but of course contain lots of citric acid - will now cut down and see if it makes a difference. My main downfall is dark chocolate, hopefully that is not detrimental to my condition! Would love to hear more from you. Gig

  • Hi, yes it's good to speak to someone who knows what the pains and problems are like. I've had all the routine tests for diabetes, B12 deficiency and thyroid problems which are negative and the neurologist just shakes his head and says my PN is idiopathic, ie. They don't know what is causing it. I also have another autoimmune problem, antiphospholipid syndrome, which causes sticky blood. I'm 64 now so my pace of life is slower anyway. It's important to wear comfortable footwear and clothes and to avoid standing for long periods. But there are exercises to keep you healthy like yoga, Pilates, tai chi, swimming and gentle walking. You just have to try not to challenge yourself too much and know your limitations.

    I love dark chocolate too! I have to limit alcohol because it affects my walking if I have more than 2 glasses of wine. I have to watch where I buy fruit because some supermarkets sell fruit eg blueberries, that have been either been sprayed with pesticides or preservatives, and with other shops I'm fine.

    If I had the pain every day I would take the medication too. I would have to because it's unbearable. But I know that my pains usually peak and than start subsiding within 48 hours.

    I recently had shingles again and the GP prescribed co-codamol for the pain, and 1 tablet sent me back to sleep when I was getting pain during the night, so I will probably try that again. I usually try a combination of valerian tablets, piriton antihistamine and paracetamol. I have tried gabapentin, pregabalin and amitryptaline on a one-off basis but they don't work like that, you have to take them every day.

    You must be managing your condition well to have reduced your pain level and live a full life. I hope you will start feeling more positive soon.

  • I also have neuropathy, the neurologist discovered my diabetes. I take gabapentin and tramadol which I guess help some. I have asked and asked, but the doctor just wants to keep increasing the dosage of the gabapentin. I can hardly handle the dose I am on now, for staying awake!

    I didn't realize my night walking (and maybe vision too) was due to the neuropathy. Thank you for mentioning this!

    I also have in hands and legs up to my hips, and now starting all the burning and tingling in my feet. It is very hard to sleep and function each day. I finally gave up and retired early since my work had sold to someone out of state. still have trouble sitting in some chairs, if don't sit or lay just right, it aggravates the legs and the pain is unbearable.

    Like both of you, I don't wish this on anyone, but am thankful to now be able hear from others with this disease. Thanks for all your input!!

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