Also posted on autoimmune thread...

Hi all! I'm new to this thread, and really scarred and confused. I have been in disabiling pain for two and a half years, and it keeps getting worse. I take Cymbalta, Lyrica, Fentynl patch (50mg), percocet 3-4 X per day and mobic to help control the pain, so I find myself either in pain or fatigued. So far, my doctors are not able to help me understand what I have. They know it is autoimmune, but that is it. My neurologist thinks I have small fiber neuropathy, but I don't feel like it fits since my pain is EVERYWHERE from the top of my neck to my toes, and everywhere in-between. Shoulders and legs hurt the worst.

OK - here are my labs:

ANA + (finally) at only less than 1:160 but everything else is going up, so I assume this will too

ACA IGM > 100 (Strong Positive)

IGM - 449 (range 45-250) (was 300 six months ago)
Sed Rate: 16 (was "4" six months ago
ANCA negative

GMI Antibodies: 63 (>30% positive)
ASIALO-GM1: 50 (same range)
MAG ABS IGM normal
GD1a Antibodies: 20 (>19 positive)
GD1b Antibodies: 57 (>25 positive)

IFE not detected
CFS protein: 58 (> 45 positive)

No bands or Lyme detected, and EMG was normal.

My first neurologist immediately started IVIG when she received the results, but after six months of aggressive treatment, my numbers kept going up, so we stopped. Second neurologist looked at my results and said "I'm not impressed, I don't think this is a neuropathy." But I know in my heart it is. I know I have nerve pain, I can tell by now the difference between nerve and muscle pain, which I also have. I also have some weakness, my legs shake and I have to hold onto a handrail when I walk downstairs.

I am really new to this, and really confused. I can't continue to live like this. I do have an appointment with the University of Michigan Autoimmune center on March 26th, and a new Rheumatologist on March 8th.

I know that I can't take any advise in place of my doctor's, but do these results look abnormal? What does the GM1 antibodies mean? Are those numbers high? How high are others? What tests are we missing?

Thanks anybody for your help!!!!!!

Hi I am sorry you are facing this and the struggles of why. I am from MI too though now I live in FL. Have you seen any rheumatologists yet? I am glad you are getting other opinions too. Have you had any emg or mris? Sometimes one can have a multiple dx. Even on here people have auto immune and PN and each causes there own set of pain. I am not sure what the meaning of the tests are but can you call your doc and speak to him on the phone? He should tell you what the meaning behind this is. Don't be afraid to speak up it is very important. Make sure to keep copies of all your test results to bring to your apts too. I wish I could help you more but try to take 1 day at a time cause it just takes 1 doc with a new approach and eye to help you.

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.

Here's where I struggle too... I have an appointment on March 26th with the head of Immunology at University of Michigan (funny because I went to MSU!). Anyway, should I be seeing a neurologist there instead?

Thanks again. I reread these now that I have more time, and there is some great information. I appreciate the explanation between the antibodies, and also the comment that SFN can cause wide-spread pain, not just in the hands and feet.

I am scared to try any immunosuppresent drugs, are those like chemo?

And last, yes, "I wasn't impressed" either with that second doc. I was so excited to see her too. I wonder if she just didn't want to take on a basket case? She was soooo nice in the hospital when she begged me to come see her!

These are always hard decisions. Whatever you decide, don't second guess yourself.

Also, I would recommend having your blood tested by Igenex lab. It is a lab that specializes in Lyme. My docs don't give it much mind, but, at least it can rule OUT Lyme. Mine admit I could have a post lyme issue...that is now an autoimmune disease. I always wonder when folks have GB like profiles. I had Lyme, and they caught it right away, but my labs are negative everywhere but by Igenex. Liza Jane may have a link to the lab on here, I don't know.

I am not on long term antibiotics....they did me no good either.

I do think IVIG takes a while to work for some people and progress is not getting worse. I too am debating adding some 'chemo' like drug, which I KNOW won't sit well with me. Just really hard decisions....I understand.

--have been developed for blood cancers, which in many cases are the result of the immune/immunoglobulin system gone haywire and over producing rogue antiboides, and yes, they have been tried, in differeing dosages, for other atuoimmune problems as well. There are some well-documented side effects, but the decision whether or not to try them is very individual to the case.

If you are going to a teaching hospital, it might be a good idea to see a nuero as well as a rheumie, but not just any one; it shuld be a neuro who specializes in neuromuscular disorders and/or neuropathy. (Too many of them emphasize the central nervous system--strokes, MS, seizures--and may be unfamiliar with autoimmune issues and such.)

It soes sound as if that original neurologist at least has a clue--those anti-neuronal antibody tests are not standard procedure from most neuros (they are rather specialized).

Thanks. Ironically, my sister has been diagnosed with Lyme, and so has my Mom. Mine has always come back negative by the normal Western Blot, but my sister believes so much in Ignex, that she sent me the pack and even offered to pay for it. I pulled the pack out yesterday, and finally after six months, decided to get the test done. I plan on having it done today!! I want to have the results done by the time of my UofM appointment on the 26th of March.

My first neurologist is great, I really love her. The only problem is, she is the one referring me out (ha ha). She is good enough to know she is over her head. She feels like since the IVIG didn't work, she is out of options. I think I will do some research on a good neurologist at UofM too. Maybe the immunologist there will have his own ideas, but I can always cancel the appointment then. Thanks for the insight on what to look for. Yes, I've seen two other neurologists, and once the EMG, Brain wave thingy, and brain MRI come back normal, they seem to think sometimes it is "stress." I wasted two years on a bad neurologist because I used to take their word as God.

Thanks again. I am so happy to have found some people I can talk to about this stuff. My family basically thinks I am nuts. While my husband is supportive in helping out when I can't around the house, he is not as supportive about helping me solve this riddle. He thinks I talk about it too much. At least now, I have an outlet and some answers.