My wife has tingling limbs and her test results (nerve conduction, bloodwork, MRI, etc) all came back without any problems. Is this normal to have all tests come back ok, but still have PN symptoms? I thought that even with idiopathic neuropathy that at least some test results would show something abnormal, that the "idiopathic neuropathy" simply meant that they don't know what's causing the abnormal test results.

How common is it to have PN symptoms with no abnormal test results? Is it worthwhile to get a second opinion, or is it best to forget about trying to find the cause and just start treating the symptoms?

Idiopathic means they don't know why you have neuropathy.

Nothing to do with test results.

Many people get all kinds of blood tests which reveal nothing. And the doctor says "you have Idiopathic Peripheral Neuropathy".

Like what happened to my husband for 15 years.

Then he got a spinal tap, they found protein, they concluded he has autoimmune stuff going on, and now he is on IVIG. It's helped him a great deal.

The word idiopathic is often misused. This word means ONLY that a cause of the neuropathy or other condition is unknown or more precisely: condition(s) without clear pathogenesis, or disease without recognizable cause. It has nothing to do with the results of tests. It simply means that the cause is unknown and often stated as 'etiology unknown'. Guess it's more a matter of medical grammar than anything else.

Your wife should get a skin biopsy done. The nerve conduction test only tests for large fibers. It could be small fiber. Correct me if I'm wrong.

Jim I am in the same boat at the moment. The tests results I have had done to date came back last week as NAD (no abnormalities detected).

However that doesn't mean that what I am experiencing is psychosomatic (ie. all in my mind) it means that they either haven't done the right tests for the particular problem (ie. haven't looked hard enough) or medical science yet doesn't know everything and hasn't 'discovered' some causes for PN.

There are quite an extensive number of tests which can be done and sometimes it's a matter of exclusion.

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

http://www.dcmsonline.org/jax-medici...uropathies.htm

http://www.neuro.wustl.edu/neuromusc...tml#idiopathic

These two URLs don't work. It looks like part of the address has been replaced with ellipses. If you still have these URLs would you mind reposting? The other two working URLs had good info in them.

TIA,
Jim

I'm currently reading "Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop" by Norman Latov and he confirms what you just said. Since my wife's current neurologist didn't know to perform a skin biopsy we're now considering changing to a neurologist that specializes in PN. The only problem is that he's about a 2.5 hour drive instead of the 10 minutes to our current neuro.

Any advice on whether we should drive five hours round trip for a neuro who knows more about PN, or stick with our local neuro who's already exhausted the options he knows about (but is willing to work with any more info we bring him from sources like this forum).

I think it's a no brainer. You have already said that the current neuro doesn't know anything else to do. If I had the opportunity to see a neuro that specializes in PN, I drive the distance without another thought. Yes, it's inconvenient, but it may save your wife a great deal of pain. Since your neuro seems willing to work with other sources of information. How about a consultation visit with the neuro that is two + hours away and any tests, etc that the consulting neuro advises might be done by your present neuro?

Billye

I would phone up the neuro who specializes in PN. I would try and get this guy on the phone. I would ask questions. If you get a reasonable, respectable guy who seems knowledgable about what tests to ask for, then I would go for it.

And if I couldn't get that person on the phone, I would ask if they do e-mail, or take faxes. Then I would write down all my concerns, and send it in an email or a fax. Then wait a short time, then phone them up and ask "do you have a minute to answer some of my concerns.

I do this all the time. Sure, docs are busy and can't sometimes come to the phone, but they have assistants who do this for them. You ask the questions, the assistants get the answers and phone you back and help you out. Or you can ask "when is a good time to phone you back so we can see if this neuro is right for my wife".

See where I'm coming from???

Before I drove all those hours, I would try and get SOME kind of handle as to how the doctor is, what kind of tests he would have done. I mean, you have the right to do this. I've done this.

And if you get a person on the phone who won't give you the time of day, well, I wouldn't go to that office in any case. Because you have to deal with staff and some times, that is not an easy road.

Just my two cents.

Melody