Peripheral Neuropathy Community Group
Support for those diagnosed with peripheral neuropathy
Seems like this is a quiet group but I thought I'd reach out and see if anyone shares my symptoms. I know many people experience pain with neuropathy, so I know and am grateful that my primary symptoms are itching and tingling, focused in the feet at first, then coming a little into my hands, then really going wild and stumping my doctors when it moved into my scalp. (It's not supposed to affect the scalp.) I've been switching meds for a couple of years to find one that keeps my scalp itching & tingling to a minimum. I experience occasional pin pricks all over my body, too. These seem to be increasing in frequency in the last year or so.
Anyone find these familiar?
Anyone find these familiar?
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.
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?
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.
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.
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.