clarifying the word Idiopathic - more doubts
 

When people say its neuropathy is idiopathic, does this means, people don't know what cause it, or every exam is normal (including ski biopsies) so people should not have it...

By the way, how long is a leason in a large nerve detectable in a EMG? Is always detectable dispite its healness?

And also, are peripherical nerves composed by large and small fibers? Or do small fibers only exists in the skin?

Thank you;

Idiopathic means the doctors don't know what causes the symptoms.
I have abnormal test results and the docs are now looking for the cause.

My neuro yesterday said idiopathic means they are idiots and can't figure it out----somethings remain mysteries even to the best doctors. I think doctors who care get very frustrated when they cannot find an answer of what causes a patient's health problems.

Lifesaver is right saying
Idiopathic means the doctors don't know what causes the symptoms......idiopathic means they are idiots and can't figure it out.....

The definition of peripheral nerves is that they are not central nerves, not part of the central nervous system - therefore on the periphery.
Any nerve on the periphery is peripheral, whether large or small, axonal or myelinated, sensory, or other.
Peripheral Neuropathy is just that.
Some sort of damage to the peripheral nerves - anywhere on the body or in the body.
If the cause cannot be found, it is labeled idiopathic.
Treatment & medication for idiopathic PN, is 95% the same
as if a cause is found.
The 5% difference can cause some minor differences in treatment or medication.
A long, expensive search for a cause, usually only confirms that the treatment you already have been getting - is the proper treatment for your PN.
This is when all other testing has proven that they cannot find a cause with the standard testing procedures done by a specialist- a neuro who specializes in neuropathies. Not just any neuro.
The most extensive site for tests for PN can be found at
www.lizajane.org
compiled by experts & PN sufferers, specifically for us.

I agree with Bob, but want to add, that if you have an underlying disease, such as diabetes, or autoimmune issues, THOSE need treatment or control.

The PN is usually medicated with standard stuff like lyrica, neurontin, amitryptiline or whatever.

If you are 'lucky' enough to have a cause, well then, the 'cause' is treated, but, it isn't always successful in making the neuropathy go away. Maybe if you are lucky it arrests it.

Before you have idiopathic PN, you need PN. PN is highly likely to be found on skin biopsy done properly, or on autonomic tests, or EMG or some other test.

If all tests are negative, it is wise to look for other reasons of why you may not be feeling well.

I think "idiopathic" is misleading.

Neuropathy that arises from other diseases is basically a secondary syndrome. In medicine there are primary and secondary illnesses.

Because there are over 100 types of neuropathy, the word idiopathic was reserved for those that don't have an obvious cause. Doctors vary in their approach to finding the causes.
Some don't want to bother, and others will search until they find a cause.

A primary disease example is this:
Gout can be primary...meaning it exists by itself (this is a metabolic error of metabolizing purines).
But Gout can be secondary, meaning it may arise following chemotherapy for leukemia. When millions of white cells flood the system, purines are released, and gout can occur. This will go away once the purines return to normal.

PN is like this.
Primary PN would be like CMT.
Secondary PN arises from diabetes, thyroid disease etc.
(not all diabetics get PN, by the way).

Idiopathic is just a fancy word. When doctors fill out medical insurance forms there are codes for the diagnoses...so names have to be given for them. If no cause is known at the time, something has to be written down. Doctors have to have a word for everything, it seems.

It would probably be more clear, once a firm diagnosis is made.

Mrs D, Nide, Lifesaver and Cycleops....you are all right!
 

But that doesn't get us any closer to the 'end' of the problem as DEFINITIONS are merely that for 'NOW'. What is much more important is HOW any neuro takes that 'ideo' aspect and dig into it further FOR A PATIENT's BENEFIT!
Do we have to say only 'some things' to neuros and not others just to prod their curiousity? Or intelligence or whatever? At times, being totally and honestly candid can and is detrimental. Pity really. If all were 'out'? It could be detrimental to our overall and ultimate long-term care and treatments. Geesh! Finding a doc you can TRUST and then going thru all tests and then deciding treatments followed by any new and NOT exciting other issues that arise simultaneously or concurrently? Well, it can be overwhelming! When new 'wrinkles' arise, see if there are connections to your current problems. Takes lots of detective work! And Nide44 and Mrs D are superb in this quarter!
Do consider that any neuro diagnosis is a sum of IF this's, then THAT's? Which may or may not BE the final end of the road. At times KNOWING what your diagnosis IS? Can be a 'comfort'. At other times? It can be a prison in that YOU do not allow/consider a whole slew of other factors that can contribute to whatever you have NOW.
However, one caveat - and it is important to note. My own neuro? Each office visit for the last 18 months he's put a 'different' diagnosis at the top of each check-out sheet! Does that ever keep me on MY toes! The different 'phrases' mean different, but similar problems. But each has a nuance that seems to be apparent during THAT office visit? I'd like to 'think' that HE is constantly thinking about all those 'nuances' and not just waffling?
Each neuro problem overlaps soo many others! Keep faith and keep at it! :hug:'s - j

Um....:confused:., Uh.....:cool: !! ?
Er....:eek:, Well,.....:rolleyes: Hmmm :o...
...O.K., "J" :)

Dear Bob...
 

Love ya anyhoo.
Key issue is that docs often change their minds! And I guess they should be allowed to? But for me, as long as they continue the initial therapies and maintain them, and they work/help. Who cares?
IF ONE diagnoses gets me treatments that work, and the neuro 'feels' on a subsequent appointment it mite be 'something different' in terms of diagnosis? At least, he's got a 'record' of his considerations?
I KNOW I GOT SOMETHING, Just what, is still ultimately TBD? But I respond to the qualifying testing for one therapy which works. But, that doesn't mean I have exclusively that or something else or both. FINDING A DIAGNOSIS should not be the end all and be all of the process? FINDING TREATMENTS THAT WORK ARE. Truly wish it were easier said than done tho.
:hug:'s to all - j