Ok test results = idiopathic neuropathy?
 

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.

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.

No known cause
 

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.

Take a look at--
 

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

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).

Well...you asked!
 

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

Welcome! Jimj!
 

Does your wife know how lucky she is that YOU are going and trying to find out things for HER? Well, she IS! Super lucky!!!!!!
It sounds like you have two issues going on here? First, getting a diagnosis locally, and second would a second exam/diagnosis by another neuro be worthwhile?

I guess, getting a teeny bit more information about what's happened to get the current diagnosis [see www/lizajane.org - for all the testing options] and then see the following sites regarding diagnostic procedures...at times it's simple, others not.. History OK? Any diabetes? Stroke? ONset was quick slow? After a bad cold or the like? What meds [you don't have to say 'doses or quantities, per-se, just what is she on? Meds for other problems? We/I ask because there is probably someone here who has gone that particular road.
http://neurotalk.psychcentral.com/sh...ad.php?t=28602
It is how neuro SHOULD decide how to test, and what to eliminate...there are a mess of more tests in the LizaJane worksheets that can be a road-map for diagnostics. Keep in mind that diagnosing neuropathies is a process of EXCLUSION, eliminating what appear to be worse issues such as MS, ALS, Parkinsons..etc. Liza Jane's sheets are a menu of what can be done, but the Poncelet article from the AAFP [Amer. Acad. Family Physicians] site is the map as to why a doc should test for THIS rather than THAT....
As for more info? Has she had a glucose tolerance test? Any tests for immune anti-bodies? Blood-work wise or spinal tap wise both....What all tests besides the basic nerve conduction test have been done...believe me, you-well SHE will know when some of the more invasive tests are done!

Nerve conduction tests for me, at first, showed LOSS, but not enuf to well 'worry about'? As the months went on I knew that more needed to be done and the then neruo was indifferent to my concerns...well, I went into 'town' and got a second opinion...It was that opinion that accellerated the testing process and confirmed diagnosis...then treatments. I had my new local neuro [first second opinion?] included in the process because I knew I could not make that drive into town every three months at the rate I was going.. I suppose I could do it now, but...? My local guy got the 'reinforcement' needed to do the treatments the Big-wig suggested and Well, I'm still kicking? Also, keep in mind that at first, nerve tests CAN and do show 'some' issues, but not much, LATER tho-they show real problems...things are at first still trying to 'work' albiet not well.

As for finding a good specialist? Just put your 'region' in the 'location' part of your profile and I will bet you that members who might be in your area will either PM you about WHO to see or avoid....Even if we aren't in your area, we can find stuff useful for your needs.

My own personal opinion is IF your current doc has no 'issues' with a second opinion- by all means do so...Expect a long wait time for an exam of a 'new' patient tho...but, IF you state that you are willing to take a cancellation and can go at the drop of a hat, it just might be worth it!

Truly tho? Do not expect miracles? A good, unbiased LOOK-see, with extra tests ordered would/should be just fine thank you! Then ask the local doc for PT after all the 'mess' is done.

Silly :hug::hug:'s to you both for finding us, and I sure hope all of us can help! Laughing during the whole process helps get thru it...some of it can seem really surreal or absurd to those who aren't hurting? Also you can meet the very nicest people along the way! I find that really always helps! - j