[Sheltiemom18]

Thanks to one of our members, was directed to the Quest Diagnostic list of Laboratory Diagnosis of Peripheral Neuropathy tests.

Known for 8 months via skin punch biopsy that I have small fiber neuropathy. Very early on was Rx'd neurontin, Lyrica and Pamelor (first two were intolerable! in the extreme and Pamelor did nothing). The neuros didn't go any further with me; the first two didn't even say come back for a follow-up (Cleveland Clinic), and I live only about 25 minutes away from the main campus.

This same NT member pointed out that although the SFN is known, it's not a cause and sometimes this set of tests can determine the etiology of peripheral neuropathy. That could then point the way toward an appropriate treatment to "tamp down," as explained to me, the neuropathy and hopefully keep it from escalating.

So I'm going to request them.

Has anybody else had these tests, what was the outcome and if any were positive, what was the Dx and treatment? They are autoantibodies to peripheral nerve antigens:

Anti-Asialo-GM1 Ganglioside neuropathy, anti-GD1a ganglioside neuropathy,
anti-GD1b ganglioside neuropathy, anti-GM1 ganglioside neuropathy, anti-GM2 ganglioside neuropathy, anti-GQ1b ganglioside neuropathy, anti-MAG/SGPG neuropathy, anti-sulfatide neuropathy

Best wishes,

Sheltiemom

[glenntaj]

--as might be suspected. None of them were positive.

At the beginning of my neuropathic process, though, when I wa tested at Cornell-Weill, I was also given Dr. Latov's own ganglioside agglutinin test, which is a test that group developed to measure gross autoantibody activity. That was a weak positive, even though none of the specific "known" antibodies showed up. The speculation was that it may have picked up antibodies unique to me that were directed against nerve; the Cornell-Weill research department believes that such autoimmune mechanisms are responsible in at least some so-called "idiopathic" neuropathies.

[cyclelops]

Glenn, if I had my blood drawn at my academic clinic, would Cornell-Weill be able to do the more sophisticated testing?

I imagine now, on IVIG, they couldn't really test for antibodies, but if I ever go off, and get 4 months out for all the IVIG to be out of my system....I wonder if those tests could be run.

I am sure I had some neuronal antibody tests done, but, I am not sure I had all of them.

I have so many reasons to have PN, that many times, I wonder if any search is really worth it for me. My biggest concern is that there is an atypical hereditary component.

[atltom]

Sheltiemom,

Are the tests you mentioned just a matter of more blood taken and sent off? I'm quite sure I have not had those tests either. My ins. makes me use Labcorp so I would hope they could analyze as well.

The doctor at JH has pretty much treated me the same way. After a positive SFN from the skin biopsy, he sent me back home. He did follow up with a report and the possibility that my B6 (which was elevated at 117 at the time) or a one-time high glucose tolerance test could be the cause of the SFN. But I have had both retested and everything is normal, but my SFN is worse.

I emailed him back some 8 months later and he had me confused with some other patient. Once he got that straight, he suggested a nerve biopsy but based on input from most on this site you should avoid due to further damage.

Thanks for the info. Tom

[Sheltiemom18]

atltom -


The reply here by Glenntag is excellent. The testing info I posted here actually came to me from him. I'm FAR from a neuropathy guru!

As somebody with SFN Dx'd as I've said many times by skin punch biopsy, I'd never have a nerve biopsy done after reading all the negatives about it.

I dropped off the list of tests and a note to my primary care doc this morning asking him to order up the tests I posted here. He ordered the first one - the Asialo GM1 antibody. Don't know why just that one, but he must have a reason. Am having it done tomorrow - no fasting necessary.

If I'd put in a request to my neuro, I'd be waiting forever to get a response. But as I always request copies of all tests, will be able to take the results to my next neuro appointment.

[echoes long ago]

i had those done about 5 years ago if i remember correctly and all were negative. in fact nothing but the emg/ncs's has ever come back positive.

[smae]

I haven't had these done, unless it was part of the blood work that was done at Mayo Clinic. The doctor just told me the blood work was all negative, so I have no idea what tests were actually done. I do have the results and will look at them tonight to see if I can find any of those words.

I'm wondering though... are these tests needed if there is already a cause for neuropathy? I already know that my neuropathy was caused by vitamin deficiencies due to my gastric bypass surgery. Just wondering if that would make these tests useless, or if there is anything else they may help with (for if I haven't had them done yet).

[glenntaj]

-- of one knows a definite cause for their neuropathy, one wouldn't need all these very specific antibody tests. (And malabsorption, due to gastric bypass, gluten sensitivity, or even bacterial overgrowth after antibiotic regimen, is not an uncommon cause of neuropathy.)

These tests are specialized, but most labs do them now, if the physician requests them--Quest does them (Dr. Latov collaborated on the Quest clinical application paper to explain the rationale for these tests, and I had them done through Quest), and Athena and Specialty labs also do them. The trick is to get most physicians to realize these tests exist. This is why one has to be one's own best advocate--and have access to the Washington University Neuromuscular website, the Neuropathy Association website, the Liza Jane spreadsheets, Neurotalk, etc.

[Sheltiemom18]

I'll say "absolutely" to Glenntaj's comments that we have to be our own best advocates. If not, then who will be?

Was not referred at all to any of my specialists. It was self-referral all the way. I guess working for docs and in hospitals for so many years taught me one or two things - and one of them was: patient's have to become informed, stick up for themselves and find docs on their own if need be (provided a referral isn't required by the insurance company).