idiopatic small fibers SN and LP
 

I have been to a new neurologist today, who recomended to do LP to find out if in my case the SFSN is autoimune.
I would like to know who, with idiopatic SFSN, had a positive or negative to autoimune.

Thanks in advance

I have idiopathic sfsn and had a negative LP. It's frustrating because the neuros suspect that it is an autoimmune reaction, but all the blood work and Lp is neg.
I think that a LP is a good test to do.
Just make sure to lie down the recommended time and hydrate. I had no problems - no headache.
Good Luck!

I have full body SFN, and, with a body lit on fire, I agressively wanted every test I could have done to try to put it out.

But, and this is only my experience, I share with you that I have had the most terrible response to having an LP. It has exacerbated my problems to no end, causing stroke-like symptoms - constant right glute muscle spams, pressure in the right side of my skull, at times debilitating cognitive difficulties - which all become even more severe, and this is seven months after the test, with any physical exertion. Taking a flight of stairs will lay me out.

I've had MRI/A's every three months since and the brain is fine. UCLA and Hopkins couldn't figure out what the hell is going on, and I'm off to UCSF next week. Alas, somehow and in some way, the LP itself has caused a spreading of my nerve dysfunction nightmare, which is in certain ways worse than the original burning.

Anyway, for almost anyone, an LP is a safe, and good, option to take in trying to figure this maddening condition with which we are afflicted. But I certainly wish I could take back mine.

-- Dennis

did they find the reason
 

to your SFSN after all? Beside the terrible things that you got from your LP, did the find something? I don't want to do LP if it is not nessecery. My neuro said that I don't have to, just the curiosity...

There is a very low yield on LPs for small fiber neuropathy, unless the EMG was suspicious for CIDP. If the EMG showed axonal neuropathy without demyelination, chances are it will be negative.

There are a lot of tests one does before an LP. Have you gone throught the tests listed on www.lizajane.org?

Plus, as I've found out, getting a proper lyme test is mandatory. PROPER is the word--at one of the three lyme labs I've posted in the stickies and maybe my recent notes.

On the lyme forums, about half the patients have arthritis, and the other half have what we'd call idiopathic small fiber neuropathy.

Please check out the charts and the lyme sticky.

They found nothing. LP came in normal...except for the life altering pain. Unless you are a candidate for IVIG, which is where I was, and with a prominent guy, I'd say don't get the test, as IVIG is less for SFN than motor difficulties.

Good luck.

-- Dennis

Had an LP 2 years ago, showed normal. No bad effects of test. I have idiopathic full-body SFN.