Ok.
Soo, I had noticed that a lot of people on here are talking about pain. And they are on medications for their neuropathies for it, etc.
(Neurontin, Topamax)
Now, I have been trying to figure out if there is some certain type of neuropathy that is more apt to be more painful, thus causing the need for these meds?

Cause I have a neuropathy.. and thank the lord, I am not in pain. (which is why I am curious)


Another thing..
I was reading something about small and large fiber neuropathies. And testing.
It appears to me that persons with small fiber often get "stuck" with idopathic as a diagnosis unless they figure out that they have diabetes or something.

Since I had an abnormal EMG/NCV does that mean that I have a large fiber abnormality?
I am honestly terrified that I will go home from Mayo with an "idiopathic" diagnosis.. I don't think I could handle that.
Its hard enough that I have poor functioning of my body and my Dr.'s won't treat me for anything, cause they don't know whats wrong, and I had to wait MONTHS to get into Mayo.
If I have to go on like this.. .. I just can't do it.

Well, thats only 2 questions I guess.
Oh, and why doesn't anyone use the chatroom?

--but some people never go there, and a lot of "chatting" takes place right in threads . . .

Anyway, to address some of what you wrote--

An abnormal NCV/EMG study does imply at least some dysfunction of the larger, myelinated nerves, as the current technology can really only electrically measure such nerves. AND--it also implies that the damage is severe enough to be noticed, as there can be spotty/patchy damage to such nerves that produces symptoms, but does not show up on such testing.

All motor neurons are myelinated, and thus designated large-fiber, as are the sensory nerves that subsume the sensations of mechanical touch, vibration, and position sense. The smaller, thinly myelinated or un-myelinated nerves are all sensory, and subsume the sensations of pain and temperature. Autonmoic system nerves are also small-fiber.

Typically, people with predominant small-fiber dysfunction have that nasty burning/shooting/lancating/stabbing nerve pain, although depending on what nerves are involved, they may have numbness as well. Sometimes they have both in the same area (and that's really hard to describe to people, even doctors).

But, one can have a mixed type of neuropathy and therefore a wide range of symptoms (many causes damage a wide range of nerve types).

It is true that people with primarily sensory syndromes, especially small-fiber ones, are more likely to be diagnosed as "idiopathic", because medicine currently just does not have all the tools to definitively identify causes of snesory nerve dysfunction--for some reason it's easier to identify things that have motor effects. Various toxins and autoimmune processes are often suspected in "idiopathic" sensory syndromes, as is impaired glucose tolerance prior to diabetes, and a number of hereditary syndromes, but it's very hard to measure such things--and many doctors don't go far enough in testing (such as ordering multi-hour glucose tolerance tests, or a full range of celiac/gluten investigations, or proper genetic screens).

Diagnonsense - good quesions! At least you'll be going to Mayo and you know you will be getting some good testing...

I dont have the technical background that Glenntaj does - but I can tell you - my PN is severe sensory, autonomic, with increasing motor.... in the beginning (about 10 years ago)I didnt have the sharp burning pain people talk about here - and really never have - even thougth the PN has significanty progressed) - its more aching - completele numbness - loss of propeiation - fatique - buzzing - and the affects on the autonomic systems - which has been very difficult.... my PN is predominately large fiber with an almost complete loss of mylinated fibers, to a lesser degree small mylinated, and then also loss of both large and small unmylinated. (my sural nerve biopsy and continuing NCS/Emg'S done over the years have shown this)

My diganosis - by process of elimination and mis-diagnosis - is hereditrary - although I did get a run of IVIG at a pretty high dose but no real benefit...
They also continue to test for paraneoplastic - just to be vigilant and some confliicting biopsies.....

If you can find a cause you may be able to treat - that would be great.... to know you are doing all you can is also very important - and even just to have diagnosis to get prognosis is most important....

Dont worry about getting idiolpathic diagnosis - just make sure all your bases are covered! Have you checked out the stickies at the top of the thread? Lots of good info... the "lizajane" spreadsheets? Mayo - though I've never been there - is very good - hopefully you will get some great care there.... Hang in there....

hi there

sensory neuropathy can also be numbness - I used to have severe pain but now I am numb up to the knees, it is spreading into my hands, and I also have a lot of motor damage (sensorimotor axonal neuropathy).

I must say I prefer the numbness, the severe unremitting burning pain was hell ......

nice to meet you

raglet

All I know is when my spinal cord was cut into I am numb in a lot of areas but have traveling PAIN AND i NEVER KNOW WHEN OR WHERE IT WILL STRIKE, (opps, sorry about caps) and I am completely numb from thighs to waist, beats me, all I know is when you bleed into spinal fluid its does damage that lasts a lifetime! The pain is mainly internal! The NS that caused mine actually admitted it to me, its called arachnoiditsis?? I also have left side weakness/numbness mainly in arm and leg!

I don't have pain (yet) either, just tingling, twitching, myoclonis, dry eyes. I used to have trigeminal neuralgia which was very painful but it hasn't flared in three years. As I am not diagnosed, I don't know what to expect in the future, I know I have sensory neuropathy with (I think) some demyelination, so a bit of a mix. I do wonder if one can continue like this over the long term or if one is destined to get worse over time. so far things are bad but I know they can get a lot worse!

Mine is idiopathic small fiber. Tons of testing and no cause to be found, other than a slight glucose intolerance (not diabetic, but sort of close). That may ultimately be the cause anyway. I finally broke down and started taking meds for pain. And as mentioned, pain/ultra sensitivity/numbness in the same spot is hard to describe to other people.

My NCV was normal, but a skin punch biopsy was not. Thus the small fiber diagnosis. It would seem that yours is large fiber related. Maybe a skin punch biopsy could confirm?

Thank you all greatly for your replies.
Since I am in summer school, and its my last week, I haven't been around much. (actually, I shouldn't be on now)

Whats a skin punch biopsy? I go through the mayo health system, and they don't do skin biopsies if that is what it is.

Well, I have to work on my very last assignment of the summer. SUPER excited to be done.

I go to Mayo in Rochester in 5 days.
If they figure out the cause I will be sure to let you all know.