Originally Posted by en bloc

I haven't seen much on diagnostics & testing, so hope this opens the door for discussion about what people have found helpful and what's new.

When it comes to PN, many different tests can be done to look for the culprit....sometimes (actually, many times) still without finding an answer. They can include EMG and nerve conduction studies, skin biopsy for small fiber neuropathy, sural nerve biopsy, and of course basic xrays and MRI's to check for mechanical/structural problems where nerves may be damaged as a result.

I have had all of the above over the years, but minimal findings here & there didn't account for the severe nature of my autonomic neuropathy and now more pronounced PN affecting proprioception, balance, mild sensory, and pain in the neck, back, legs, and bottoms of my feet.

However, my most recent test provided the answer. It was the results from a new type of MRI to specifically look at the dorsal root ganglia, and referred to as the DRG protocol. This MRI w/contrast apparently uses a standard process (not the experimental water excitation) with a 1.5 tesla magnet. They could clearly see the ganglia...enough to determine there was bilateral enlargement and had an increased signal, both consistent with ganglionitis.

I also have the autoimmune disease, Sjogren's, which has known neurological manifestations to include a direct relation to ganglionitis. So this finding actually made sense and put many unanswered pieces together.

Anyway, the test may prove helpful for others where a definitive diagnosis has not been determine. It will likely not be available at your community hospital, but certainly worth checking out if you have access to large university hospital like Johns Hopkins, Mayo, Cleveland Clinic, UCSF, Duke, etc. Like I said the MRI is still "standard" in most regards, just utilizes a new protocol, so my insurance (Medicare) picked up the cost without question.

Of course, since there are MANY causes of PN, other simple tests should be checked first...starting with basic blood work. Maybe mrsD will pipe in with a good list of the basics in regards to diabetes and vitamin/mineral checks. I'd also like to hear if others have found specific tests (new or otherwise) helpful. Word of mouth is sometimes the best source of information.

I completely understand the frustration of not-knowing what's causing all the symptoms & pain. I struggled with finding a proper diagnosis for over 15 years. Therefore, maybe asking about what new testing is available at academic facilities can open the door for not just a definitive answer, but better treatment options as a result.

Originally Posted by WayneR

Thank you so much. I assumed that it had to be something like that. It is strange, however, how stretching the skin slightly like closing my hand or the breeze on my face or the movement of my clothing can be painful.

Originally Posted by Idiopathic PN

Hi. I have the same over-sensitivity in my skin - legs, arms sometimes back and face. I also have painful feet. So far, there has been no cause found in my condition. Mine started in all the areas I mentioned. Do you feel pain with the touch of your sheet? I do.

I don't know if this common, when I wake up in the morning I don't feel the stinging (like sunburned skin), burning sensations. But once I get up, there it goes again.

Originally Posted by amike

There is a strong circadian pattern to my NLD SFN/G. When I get up in the morning all is well. However across the day, burning in my thighs, arms and face gets worse. I'm typically most miserable in the evening when I am trying to relax after work. It may be that I have fewer opportunities to get fully engaged in a task that limits my awareness of pain, but watching TV at night is a high probability time to notice pain. Probably a statement on the quality of TV programming.

Originally Posted by mrsD

I would wonder if you have an inflammatory thing going on?

You could try our AlkaSeltzer original formula trick, to see if
it helps.

Did I ask you about using any ACE inhibitor drug for hypertension? If you use one, this could be causing your problem too. They raise bradykinin in the body, which dilates blood vessels and this puts pressure on nerves.