Idiopathic Peripheral Neuropathy

Hi, I'm new here and have been 'diagnosed' with idiopathic pn. Obviously it must have a cause, but blood tests and an MRI scan have failed so far to find anything. Symptoms are tingling/numbness in hands, feet and legs and a feeling of walking on cobbles all the time. It started with numbness in the top of my right thigh and extreme burning sensations in my hands and feet. Does anyone have any suggestions as to finding a cause or treatments that help?

11 Replies

  • Have they checked your bloods for b12 deficiency, thyroid, folate, and done a coeliac screen? Any of these and unfortunately many others can give these symptoms.

  • Thanks for your reply. They have checked for b12, folate and thyroid and I'm having a vascular and a coeliac test later this week. If those show nothing, I don't know what to do next.

  • Do you have the results with ranges for B12 - Folate and all the Thyroid tests ? Low B12 can cause the symptoms you describe. A result under 500 can cause neurological symptoms .....

  • Hi, I have had IPN for 19yrs. I was told that it is very much a "lifestyle disease", ie. too much alcohol, diabetes, while guilty of partying too much I didn't become diabetic until 5yrs. ago.

    For treatments, I was taking Gabapentin stepping up until I reached maximum dose two years ago when I started taking 300mg Pregabalin twice a day and they work much better.

    You could also try a herbal remedy which I find helpful and that is Garlic, Ginger, Ginkgo and Cayenne by Organic Nutrition, they are quite pricey but I find they help lessen the symptoms.

    Hope you find something useful here, good luck.

  • Hello, I have PN also, my diagnosis is CANVAS, which includes PN. I take 75mg. Of Lyrica 2x day. It helps somewhat with pain but gained 12 lbs. and feel bloated, so it's a trade off.

    Marijuana takes the edge off at night. I am gluten free and see a vitamin therapist who put me on heavy doses of wheat germ oil and fish oil. I also take alpha lipoid acid pills 600 mg. 3xday. I will stick to this protocol for a few months and see if it helps and if it doesn't, I'll drop it.

  • Hi I was on Lyrica 300 twice a day after a couple of years with no results I stopped taking it. I to use Marijuana now an then which helps to relax my muscles. I use crystal magnesium (teaspoon in cup of water boil until dissolved wait until cool down then put in a spray bottle) I spray on my legs.

    I have just been diagnosed with Myotonic muscle dystrophy an taking Baclofen, also I take targin for pain. I try everything for P/N when I don't get any relief its back to the drawing board. I do however get night time relief with my feet laying on lambs wool without socks.

  • Thanks for the reply. I've been taking ALA, but only 300mg a day, but have yet to notice any difference. Doctors don't seem to know much about it all.

  • It's so wonderful to see so many of you sharing your experience. I was diagnosed with idiopathic pn 5 years ago. I came across neuropathy solutions from which had helped me to reduce the complications in the long run.

  • Hi! New to this forum. Been diagnosed with diabetic peripheral neuropathy. I mostly have the pins and needles sensations in my hands but now they are both numb up to my elbows. I feel like I have on skin tight gloves. I have recently begun to have body "twitching and jerking" movements, kinda like mild seizures. I've had rls in my legs for years and wonder if this is the same thing, just now in my arms too?!? Anybody else out there "seizing" along with the neuropoathy?

  • Yes, I've had muscle twitching in my calves for years. I wonder if neuropathy is something that you have for years and then appears later. I also get red flushes on my neck and chest, and have had all my life - my neurologist wondered if that might be a sign of neuropathy lying low.

  • So sorry, djt1, that you have been dealing with this for years. I've never had an issue with red flushes and only just started having symptoms of dpn back in May (of this year). I do also have osteoarthritis, Carpal tunnel in my right hand, ulnar neuropathy in my left elbow and an active pinched nerve due to a herniated disc at L5/S1. So, as you can see, my body is a mess! All at the tender age of 51. If there's no cure for this stuff, I don't know that I want to be around for a long time. Yes, on top of all that, I suffer with depression and anxiety, PTSD, and I'm bipolar. What a fun life, I have! Take care and I hope your neurologist will provide you with answers and relief. Best of luck!


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