[Hope15]

Well, it's over, and yes it hurt, but those of you who described it to me were quite accurate, and I got through it. I had it done at a teaching hospital by a neurologist. There were a couple of residents in the room observing and he was talking and explaining things to them as we went along. I just held still and followed directions, and waited till it was done. He asked me which side of my body bothered me the most, and I said both, but the left side was the worst, so that's the side he did it on. Afterwards, he said that the results would be sent onto my neurologist, but it appeared everything was normal. What??? How can I hurt so much in all of those areas, but the nerves and muscles are normal? I don't understand.

The MRI's I had on my cervical and thoracic spine went alright. I don't think they believe any of this is coming from there, but I will get results Monday. Guess unless something comes up, it looks like it will turn out to be idiopathic. Like so many on here, I am burnt out on this whole thing...

[dahlek]

Even tho there wasn't anything dramatic to find? Obviously something is 'going on'! Don't give up hope or get passed off.
Listen to your instincts. Persist. 's - j

[dmouse]

Don't give up. If the small fibers are damaged, it won't show up on an EMG. That will only detect damage to the long fibers. Small fiber damage is still damage and it still hurts. Was there any discussion of doing punch biopsies? That is becoming the predominant way of detecting small fiber damage as it is less invasive as nerve biopsies.

[jsrail]

Hope15, dmouse is exactly correct. I have Small Fiber Neuropathy and my nerve conductive test and emg were normal. But that doesn't mean you are making this up in your head! Keep at them!

Jay

[Ron9]

I may have just learned something.

Trying to memorize all the medical terms is ..... well something that is way down on my list.

But .......

If the EMG is the test that they stick little pins (lots and lots of pokes) around the area (in my case both legs/feet if I have the right test) ........... then -

I assume I do not have SF.

My test (if it is that test - it was called EMG) was very clear to the neuro. "YES you have PN and it is worse in your left leg and foot." Which yes it was worse in my left leg and foot than my right. (still is)

My B12 and all blood work was fine (still is) but the dreaded > idiopathic

Do some people have both ..... both large and small?. I guess the answer would be yes - so maybe I did not learn anything about my own PN.

[Hope15]

Originally Posted by Ron9

I may have just learned something.

Trying to memorize all the medical terms is ..... well something that is way down on my list.

But .......

If the EMG is the test that they stick little pins (lots and lots of pokes) around the area (in my case both legs/feet if I have the right test) ........... then -

I assume I do not have SF.

My test (if it is that test - it was called EMG) was very clear to the neuro. "YES you have PN and it is worse in your left leg and foot." Which yes it was worse in my left leg and foot than my right. (still is)

My B12 and all blood work was fine (still is) but the dreaded > idiopathic

Do some people have both ..... both large and small?. I guess the answer would be yes - so maybe I did not learn anything about my own PN.

Ron, I think that is one of the best things about this board.....we learn a lot from different members experiences, I know I have....

[Hope15]

Originally Posted by jsrail

Hope15, dmouse is exactly correct. I have Small Fiber Neuropathy and my nerve conductive test and emg were normal. But that doesn't mean you are making this up in your head! Keep at them!

Jay

I will Jay, thanks for the support.

[Hope15]

Originally Posted by dmouse

Don't give up. If the small fibers are damaged, it won't show up on an EMG. That will only detect damage to the long fibers. Small fiber damage is still damage and it still hurts. Was there any discussion of doing punch biopsies? That is becoming the predominant way of detecting small fiber damage as it is less invasive as nerve biopsies.

Good point and thanks for the reminder! No, no mention of doing the punch biopsy, but I will definitely mention it.

[Hope15]

Originally Posted by dahlek

Even tho there wasn't anything dramatic to find? Obviously something is 'going on'! Don't give up hope or get passed off.
Listen to your instincts. Persist. 's - j

Thanks dahlek, I definitely won't throw in the towel. I've got a whole list of questions for the doctor on Monday!

[chamade]

Hey there, I also repeated my NCV/EMG a few weeks ago at the UCSF and it came back normal again after 2 years. BUT...my ACE serum levels came back high which points at Sarcoidosis, which can cause small fiber neuropathy (undetectable on EMG/NCV). I am having some tests done to confirm Sarcoidosis as my diagnosis so that we may start treatment.

Are you doing anything else besides EMG/NCV...blood tests for specific immune diseases, skin biopsy to check for small fiber neuropathy etc.? Do you have any other health issues besides neuropathy? That could point to a diagnosis/tests.

Keep going, something will eventually come back positive.