Hi Monica,
Yes this is a quiet group....I check it all the time, but not many posts...

I know what you mean .....I have neuropathy of the lower legs, and also now of my R hand. I have no clue what the leg neuropathy is from, but have my suspicions. My main symptoms are burning, very occasional tingling pins and needles sensation. No pain really. And I get itching of my upper extremities and my scalp too! My neurologist I have told him of my itching, but he's not listening I think.

My history is such that I have RA, Sjogren's (associated with the RA), and now we are trying to rule out Celiac's Disease. With Celiac's you can get neuropathy and itching!!! Hmmmm. So I need to have the blood work for that this coming week.

I also have GI symptoms consistent with Celiacs, not just the neuro symptoms.

Neuro symptoms can be so diverse. Do you have other diagnoses to go with the neuropathy that might point in a direction to ANOTHER dx? not that I'd want that for anyone, but sometimes you uncover something, and it leads to something else.

You have itching in your scalp too! I have yet to encounter anyone else who had it in the scalp. Finally! :-D It's so nice to not be alone in this strange symptom to this strange condition.

It upsets me to hear that your doc isn't listening to you. Itching may be less stressful than burning and even the pins and needles (is that the same as pin pricks, or do you mean more of a loss of feeling?), but it can be a big issue, and distressing, especially in the scalp. For quite a while I was using Lanacane on my scalp so I wouldn't have to scratch so often. You can't very well go around in public scratching your head!

My doc put me on Lyrica and it started to work, so that I could stop using the Lanacane (the itching became tolerable only, not gone), but after several months the effectiveness wore off. So now I'm on Elavil, which seems to be working well, and I'll be going up in dosage soon. (He also wants me off the tegretol I've been on for years.)

I actually was misdiagnosed for years (I think it was HMSN, but it may not have been even that specific). I was diagnosed in Chicago, and when I moved back to the New York area, my new doc had some doubts about my diagnosis, given my symptoms - I've spent some years running, and have no loss of movement or strength in my legs. My doc sent me to a doc in NYC, one of 10 in the country who specialized in a certain neuropathy, can't remember which. They did a biopsy and determined that I had small fiber peripheral neuropathy.

As far as cause, no doc I've seen has been able to find one. In fact, I stumped the docs in NYC. I'm not supposed to be able to do things like run. Or have so much motor control, apparently. It's almost like I don't have it. But then there's all the itching! And the biopsy was conclusive.

There are hints it runs in my family. My mother thinks she had some neuropathic symptoms when she was younger in her arms, and now she and my younger sister have similar itching in their feet. There are neuropathies that are hereditary, aren't there?

The only condition that's associated with this that I have is Restless Legs Syndrome - which drives me nuts! But fortunately is not quite at the point of (usually) keeping me awake. Do you get that? (With all you have, I certainly hope not!)

Sorry to go on so long! It's so rare to find someone with similar symptoms. I hope you get some relief from your itching and other symptoms. If the Celiac diagnosis is positive for you, does that mean they would have a different treatment for it?

Hi Monica,
Still waiting on the celiac's results...I guess if +, then I go gluten free, and perhaps that might control the PN? Who knows.? Now my ortho is sending me for an EMG of R arm....That is March 8th. I see neuro the week after that as well as ortho....there'll be lots to talk about I guess!!!

I have no clue what neuro will do for me....he's hard to pin down....so we will see.

Hi Marie,
I was wondering if you'd gotten your test results. How did it go? Going gluten free? What about the EMG?

I mentioned earlier that the RLS had not been keeping me up - but that's changing! Twice this week I've had to pace around my family room around midnight to get to sleep. Oh well.

Hi monica and all...I was dx 3 yrs ago with idiopathic small fiber sensory motor pn, what a mouthful!! lol I have chronic pain and tingling, burning in both feet, legs and arms. I see a PMD and take Lyrica plus Lortab and fentanyl patches. When I have a bad flare, it actually keeps me housebound and occ bedbound and at that time I do have tingling in my face and scalp but not itching. Unfortunatly, yes, I have found that it has increased over the yrs. Just wanted to respond and let you know that u aren't alone :)

Hi, I'm new to this website, but I've had Peripheral Neuropathy for more than 20 years, and it is now head to toe. I take some natural things for it, but no prescription meds. I also have itching...mostly my back. AND I do have Celiac, confirmed about 7-8 years ago. There is a really wonderful lab that specializes in Celiac and other digestive disorders. Their tests are more sensitive and accurate than traditional blood tests and endoscopies. And they are not invasive. You also do not have to do a challenge with gluten. You can order the tests online, without a doctors order. My insurance covered mine. The lab is www.enterolab.com. Check them out!

hi monica! i was on taxol for my last 4 rounds of chemo and after the 2nd round i started experiencing horrible itching in my hands, palms and top - and then my feet, now the itchiness has gone to my torso. i am on 600 mgs of neurontin a day and i take 75mgs of hydroxyzine twice a day. i get really bad pin pricks all over too. as for the scalp, that hasnt been affected. i pray that you find relief - God will be with you throughout this whole journey - this too shall pass! good advice from my mom!!

I see this thread is a few months old..I have had some tingling in my legs and sometimes arm for several years..It is getting worse..the feeling is like a buzzing or phone vibrating in my legs.. lately it has been burning or feeling like electric shock in my feet.. also itching..I had one emg but the doctor does not seem that impressed or concerned...he is the rheumatologist I see for fibro..I also have arthritis in my spine but he says that is not related..Any ideas on the next step I should take?

Micki,
I would suggest seeing a neurologist. I don't think an EMG will show anything. I had a biopsy that finally gave a definitive diagnosis of "small-fiber peripheral neuropathy." The biopsy was a simple, outpatient thing, btw. Much simpler than you'd expect. But your symptoms definitely sound similar to mine. I say, see the neurologist, regardless of what your other doc says.

i have severe p neuropathy and my hands itch very bad to the point i cant sleep at times and now my hands are starting to not open as good and cant grab thing very good at times

my main pain with my neuropathy is in the trunk area. it feels like im sunburned and hurts all the time. 24/ 7. i have pop up pains everywhere. cant say my head itches from it. but everywhere else itches. im up half the night scratching one place after the other. can anyone recommend anything otc before i have to be committed!

Hello to all...I have been searching for ten months to locate a site like this. I can cope with the PN in the feet and hands, but it is the scalp issues that have driven me crazy. Been diagnosed with an antibody called "ts-hds" which kills off the good antibodies which protect my peripheral nerves. It's a rare disease, only one lab in the country even tests for it , and it has not been documented to effect the scalp! Can anyone shed some light on the scalp problems and if you have found anything to use for relief of burning and oily-gummy deposits? I've used everything!!!!!!

I'm suffering from similar symptoms. I've had widespread neuropathic itching on and off for 3 years. It's getting worse and I'm having to take sleep aids. Even then I'm jolted awake multiple times a night by an intense itch, often strong enough to make me twitch. I've been on Gabapentin and Hydroxyzine the entire time, but they aren't working now. It's absolute torture.