Lately I have been getting this tingling feeling around my mouth, back of my head, and down my arms, both sides, it's crazy.

Can PN have this effect in these areas too?

Trish

Hi Trish,
I have both PN and RSD. I get tingling in all the areas that you said except for down my sides. When I first saw a neurologist and told him I had numbness around my mouth he said he thoughts maybe I was getting anxious about what I was going through. Then when I had positive testing for neuropathy he said it is a symtom of neuropathy. Sorry to hear your going through this. If it continues let your doctor know maybe meds need to be adjusted or added.
hopeful

Besides anxiety... tingling/numbness around the mouth is
can be sign of electrolyte disturbances.

Low Calcium for example.
http://www.merck.com/mmhe/sec12/ch155/ch155b.html

Interesting. Every time I go to see a new neuro or doc and I tell them my lips, chin and sometimes the back of my head tingles they say that's not neuropathy but never pursue it further.

Hi everyone,
I also have facial tingling/numbness at times. I feel it most often in my chin, but, at times, have felt it in my cheeks, forehead and scalp. My symptoms began approximately 18 months ago with tingling/numbness in my feet. About 6 months later I began to have symptoms in my hands. Unfortunately, during the last 2 months, the tingling/numbness has begun to affect my entire legs, forearms/hands, my abdomen, buttocks and facial areas. Other than my lower legs and feet my symptoms seem to vary in their intensity day-to-day. Based on my EMG and physical exam, I've been diagnosed with sensory neuronopathy. Unfortunately, thus far, they've been unable to determine the cause. Except for testing for celiac disease (which I hope to be tested for shortly), I've had all the appropriate lab work with no significant findings. Since my labs for Sjogrens were negative, I may be having a lip biopsy for further evaluation. Anyway, at least in my case, the facial symptoms are part of the whole neuropathy/neuronopathy picture. The neurologist indicated that it is affecting all my nerves, since it is presumed that, based on my EMG/symptoms, that the problem lies at the level of the dorsal root ganglia. Enough about me...I didn't mean to "hijack" the thread. I hope that info. might help...

My docs say its part of my PN, and also recent very invasive dental surgerymade it worse... the nerves took a real hit.

Thank you all for letting me know you have experience this too.

--which is that far too many doctors who should know better, including neurologists, dismiss symptoms that aren't in the hands and feet as not being a possible peripheral neuropathy--they tend to think it's spinally related (if they think it's present at all--too many dismiss it as stress or anxiety).

But "peripheral" means any nerve outside the brain or spinal cord, and there are plenty of those in the trunk, the face/head, the neck . . .and while many length-dependent neuropathies may first present in the feet and hands--the nerves farthest from the body core--not all neuropathies work that way. Indeed, many toxic or acute or autoimmune neuropathies may be more global, as may many ganglionopathies/neuronopathies, that, as has been mentioned, involve processes in the dorsal root ganglia.

One often needs to print out something from a site like the Washington University Neuromuscular database just to show clinicians that these entities exist and are recognized--but good luck getting some of these people to look at them.

.....but good luck getting some of these people to look at them.

Or to even believe them - some are so wrapped around
their own god-like personas, that they tend to dismiss anything
that is brought to them by patients.

Sometimes we definitely have to press on, I have to learn this the hard way.
Because I allow doctor's bully me that nothing is wrong over another health issue for years, now it is too late. Major surgery and then I am taking my chances that it may not work and it causes major problems down the road. I talked with another Doctor of mine and he said definitely do not do the surgery, you are better off with what you have because this surgery has so many complications.

How can a doctor say nothing is wrong, and yet something major was wrong. I know doctors are not God and they don't always know, but they can tell you they don't know, and they can listen to you and take you seriously. and not just push you off because they don't have the answers. I can take if they don't know what is wrong and they work with you, but not push you out because they are uncomfortable because they don't know. Good doctors will take the time to hear you and at least try to find out. Thank God for good doctors that still care