I have small fiber neuropathy and an ANA of >1:1,280 with a speckled/nucleolar pattern and it has been this high for two years. My lab doesn't go past this dilution, so my titer could be far higher. I don't have the + specific antibodies that you have (at least not as of 6 months ago...will find out this spring what it looks like now).

Others on here may chime in with their knowledge. I am sure some one has some of the antibodies that you have.

A skin biopsy would confirm if you have small fiber neuropathy.

I had all over pain until I QUIT my narcotic meds....sounds odd, I know. I am still in pain in certain areas, and it hurts substantially but it is not all over. Interdose withdrawal causes some serious pain. Now I no longer have that. Although at times, pain in my right leg and in both hands is almost unbearable. I have migraine like head and neck pain, back pain, hip pain. SFN isn't just hand and foot pain, it can be a 'bone' like pain, deep and aching too. I am quite limited.

I have sensory and autonomic neuropathy. I am on IVIG. I had Lyme 16 years ago. I am currently diagnosed with primary Sjogren's, but the rheum feels that is not an accurate diagnosis yet....stuff is evolving, I guess. I won't get into all my issues.

Judging from your screen name, you are quite a bit younger. I am grammyof3.

My rheum said that neuro is very slow to respond to IVIG. IVIG is one of the better treatments out there, others have such substantial side effects.

I guess I would ask about a skin biopsy if you feel you need validation that this is or is not small fiber.

On the GMI +...it is an antineuronal antibody. Seems to me, that you are in the middle of a diagnostic journey that could potentially last a while. Here are are few references that I have found. I wonder if a muscle biopsy is another test that may be enlightening.

http://www.nni.com.sg/MedicalSpecial...larLaboratory/

http://www.genengnews.com/news/bnite...?name=49795740

The neurowustl site below may help. Many of your antibodies seem associated with neuronal disease.

http://neuromuscular.wustl.edu/antibody/pnimdem.html

IVIG is used a lot in neuronal disease, small fiber and demyelinating.

--to the Washington University at St. Louis Neuromuscular disorders database, which is excellent and comprehesive when it comes to neuro disorders and their attendant lab accompaniment. It is very good on describing anti-neuronal antibodies, of which you seem to have a bunch; I'm not surprised you have neuropathic symptoms. Their presence may also explain your relatively high IgM, especially in light of the negative IFE (immunofixation electrophoresis, designed to detect rogue antibodies such as monoclonals, which themselves can caue neuropathic symptoms and are often associated with blood diseases).

Did they do an immunofixation of urine as well as of blood?

At least you apparently have a doctor that thought to test for anti-neuronal antibodies--I've met too many rheumies and neurologists who don't seem to know of their existence.

There is often cross reactivity between the Anti-GM1 antibodies and the anti-Gd1 gangliosides (peripheral nerve components); and it may be hard to pull these effects out when people have both sensory and motor symptoms. In general, the GM1 antibodies indicate an attack on components of the actual nerve axon, the anti-GD1 antibodies are more specific to myelin sheathing of nerves. Of course, any time one has damage to one part there can be secondary damage to another part--fraying myelin exposes the axon, and axonal damage can lead to fraying myelin . . .

Both of these, as well as the anti-Asialo GM1 antibodies, are often associated with the more acute/subacute onset widespread neuropathies--Guillain Barre and related syndromes, such as acute motor axonal neuropathy--so it was a logical path to trying IVIg. I'm sorry the numbers did not go down with that; have they thought about plasmapharesis or immunomodulating medications?

There are probably a few other antibodies you should be tested for, such as those to sulfatide, but the test pattern is absolutely consistent with a widespread neuropathy, though I'd suspect it may be more large fiber than small fiber (not that small fibers can't be affected). And, such neuropathies are not necessarily confined to the extremities--small fiber can be body-wide, too (mine certainly was). I'm not impressed with your second neurologist.

Thank you for welcoming me into your threads. I am afraid that maybe I stopped the IVIG too soon... and I wonder if it was working based on the fact that I have been feeling terrible lately. Yesterday, my toes and feet were totally numb, a new one for me. I changed anti-inflammatories, and I am pretty sure that is what is causing that.

I am supposed to see a new rheumy for a second opionion on plasmophoresis. My appointment had to be pushed back from March 8th to April 8th because I had to make an appointment for my daughter at Children's Hospital to see a pediatric neurologist. She has leg pain as well, and her Sed Rate was 31, too high for a six year old. Maybe we will help diagnose each other.

I am still scared, and I feel like I am not doing anything. My next appointment isn't until March 26th. Until then, I am just taking all my meds.