OK, so do I really even have P/N?
 

Now I don’t know what to think—and I hope some of you knowledgeable people will be able to tell me. A few weeks ago, I had an EMG that came back normal. So I said, “alrighty then, surely something will show up on the QSART.” Well, just got those results back, and nope, everything is normal on that one too. What does it mean? That I don’t have P/N, that I have a weird type of P/N that doesn’t show up on those tests, or…? :icon_confused:

I’m sure some of you know what to make of this and I thank you in advance for helping me!

Hi Joan

No, it doesn't mean you don't have NP - there are nerves in the feet that are too small to be tested, so if they are being affected it won't show up on the emg. So, it is quite possible (and even likely) that you have NP. I think it is small fibre PN that does not show up, but seeing I do not have this type of neuropathy I could be wrong about what it is called.

Best thing to do is talk to your neurologist about your test results, and I am sure there will be others along to answer you post who know more about this than I do.

cheers

raglet

Raglet is quite corect--
 

--neuropathy of the small, unmyelinated fibers would not show up on standard EMG/NCV studies, as these can only measure activity in larger, myelinated nerves. And, though the QSART is good for measuring activity of certain autonomic nerves, which are also unmyelinated, one might have a small-fiber syndrome of mostly snesory nerves that subsume the sensations of pain and temperature, without autonomic involvement.

The current gold standard for proving damage to small-fiber snesory nerves is skin biopsy to document intraepidermal nerve fiber density, though there are some other experimental procedures being developed to look for this.

The whole testing procedure is a process of elimination.
There are few, if any tests that can find the cause. No, one, 'smoking gun' procedure.
It is by testing and having each one show 'normal' that they move on to the next.
Its highly subjective, and the main reason to see a specialist neuro
who specializes in neuropathic pain- PN.

OH, OK. I thought that my neuro (actually my neuro's PA over the phone) said that the EMG is to test for large fiber and the QSART is to test for small fiber neuropathy, so you can understand my confustion. Maybe she did say that or maybe I just misheard her. At any rate, she's the same one who has said more than once that maybe it's time to turn me over to a pain management clinic. That kind of ticked me off--I'm not ready yet to give up trying to figure out the cause of my P/N!

Thanks for that info too, Bob. I'm not supposed to see the neuro again until December (I last saw her in September). My PCP suggested that I see another practice that he recommended and we did set up an appointment for next week. I'm going to call right now to see if the new doctor specializes in P/N.

I second Glenn on the epidermal nerve fiber biopsy (skin biopsy). All my EMGs were normal. My QSARTS were not, my thermoregulatory sweat was not normal, nor my tilt table.

Joan,
I do not believe that a neuro who specializes in PN would send you to a pain clinic.
That's a Dx from a neuro who is at a loss with knowledge of the condition.

My Neurontin wasn't working very well after about 6 yrs of increasing dosages.
(up to 4200mgs/day). My neuro (head of the dept at Hopkins) was out on a surgical leave, & I was rolled-over to another, younger whipper-snapper foreign exchange neuro. He tried Cymbalta and another med, gave up, & then sent me to the Hopkins pain clinic. Like a sheep, I went meekly.
That was a real nightmare.
After about 10-11 mos of various opiate (severely constipating) & non-opiate meds and trials (titrate up...titrate down, etc) Lyrica eventually - finally, became available on the market.
I went back to my original neuro and we decided to go for it.
I've been satisfied (so far) with the pain control using Lyrica & Tramadol (mildly constipating - fiber helps).
Pain clinics are not the answer for me.

lyrica
 

my insurance won't cover Lyrica (very $$$). My best evening relief is tylenol pm., and I take 4 advil every four hours (on the aevice of my chiro). Neurontin was worthless (at 4000mg!). Try acupuncture, foot reflexology and biofeedback. It gets better!:rolleyes:

Thanks for all your responses.

To be fair, it was the neuro's PN, not the neuro herself who was making the pain management remarks. But again, I don't see that neuro until December. What is it with that specialty? I've never seen that much backlog with other specialists.

Anyway, I called to see about the new neuro , and no, he's not a PN specialist. And for other reasons that would be too lengthy and boring for you to read and me to write, I think I'm starting to smell a scam between this practice, the GP and a third party. If I turn out to be right, I'll let you know.

I did try acupuncture, and that didn't help at all. But I'm not sure that I was dealing with someone who knew what she was doing so I might be willing to try again.

I tried acupuncture...
 

....twice.

Once at my wife's urging with a Chinese doctor in Saint Petersburg, Russia. One treatment each day for 5 days. Wow!. I actually had a day without any pain.

Upon my return to America, I started with another doctor. One treatment once a week... I gave it up after 5 weeks because (a) it was becoming expensive and (b) there was no discernable change.

I certainly don't rule it out, but cannot afford to shop around to find the right acupuncture doctor.

Cowboy