Thank you everyone for helping me understand! I really do appreciate your time!

MrsD - I don't take much of anything as far as medications go. My old rheumy tried putting me on so many different things for my "CREST" but I hate taking meds. Would rather try homeopathic, or just deal with it. For my stomach I take an occasional Pepcid AC - OTC. I have a small hiatal hernia, no ulcers, minor thickening of the esophagus from GERD. I do get a pressure under/behind my right rib but CT scans, a Hida scan & labs all say organs are normal. They can't figure it out. The gastro prescribed Omeprazol 20 mg - 2 at bedtime but I don't take it because side effects are headache, nausea, diarrhea, belly pain...
When the itch is just way too much, I take a single Benadryal at bedtime, but not every night. For occasional sinus headache/pressure I'll take an advil cold and sinus - but it's very rare - maybe 2-3 a month?
When my energy level is really low, I'll take a B 100 Complex. Sometimes I'll take 2, spaced a few hours apart.
I don't eat McD's, BK, or any of that garbage, but I'm not big on many veggies. I was taking the B Complex 2x daily when I was employed, along with Vits A & E, Calcium/Magnesium and potassium. I kept it up for a few weeks after I lost the job, but grand-daughter has gotten me distracted enough that I fell out of the habit. All that did help with the energy, but not much else.

I use Dreft for all my laundry, including bedding and towels, Basis all natural soap for showers. I avoid all perfumed lotions and soaps.

I also have what they've termed a multinodular goiter, but all my levels are "normal" and I don't have the TPO antibodies. They are keeping an eye on the solid, dominant nodule, but it hasn't grown in over a year.

I hope that helps fill in the gaps. Again, thanks for helping me understand!
dmouse

Goiter? Where and what endocrine glands are involved? That could tell me which sources to refer you to for the 'heavy reading' of sorts.
As for access to IVIG? Take a look at the web site for IG Living, it's a specialty magazine and sign on for free to all prior issues of their magazine. In addition, I can tell you that they've worked with many folks in your situation to try and get aid thru manufacturers and other providers to you could have treatments. While they mite not get back to an e-mail from you right away? They DO get back to you and can help you try and work things out. I have been on IVIG for over 4 years and I can tell you that because of it, I am still mobile and can think clearly, even with some pain. That is a lot to be said given all we go through.
As for an 'excess' of B -12? Never heard of such a thing! Overages of it are like Vitamin C, they just go thru you and out! No harm or foul, ever. B-6 tho is another issue [too much of the B-6 can add to PN issues, I suffered this aspect and changed my regimin a lot because of it] and GOOD metabolic bloodwork should give you a more solid indication of your ranges. Later I'll post some resources about blood tests and results in this quarter.
Also about some autoimmune disease diagnostic procedures....tho nearly all are posted on Liza Janes' website. It will take a while to get acquainted with all the tech and doc speak that goes with the territory tho... But knowing it all is ESSENTIAL for you to get a handle on what is going on!
As for dealing with your sister? Thats a sticky one, for sure. While treatments for MS are at times, similar to PN issues? They are often different and IVIG, Plasmaphersis and steroids are the NORMAL treatments for immune types..... plus pain killers. And, I consider MS and immune PN's sort of distant cousins as they both demeyelinate those danged nerves! Go your own way the best you can here.
While I would like to not have to take some meds? They are essential for being a functional human being at times. I do the minimal possible when really necessary. We do what we have to..to get by!
Enough for now, please don't be shy to ask questions! - j

I can't say thank you enough for helping me understand, and for being patient with me!

So sorry for the length of this post, but these are all the labs blood/urine the neuro ordered plus the thyroid labs my primary ordered. The only lab missing is cryoglobulin - that will come with the rest of my results. I thought it was a pretty comprehensive work-up. Did they miss anything?

As to the thyroid - I have several small cysts < .5mm and one solid (was complex till FNA), dominant 1.2 cm nodule. As far as I know - none of my glands are involved. I even just had CT scans of head, neck and chest with and w/o contrast and all was normal.

Thyroid Labs 9-30-08
TSH 1.69 uU/mL, T3 108 ng/dL, T4 7.0 ug/dL, Free T4 1.4 ng/dL, Free T4 Index 6.5, T4 Uptake 1.07

Labs 12/02/08
Test – my value - (ref value)

WBC - 8.4 (4.0-11.0 k/uL)
RBC - 4.59 (4.2-5.4 M/uL)
HGB - 15.1 (12.0-16.0 g/dL)
HCT - 44.1 (37-47%)
MCV - 96.1 (80-100 fL)
MCH - 32.9 (27-34 pG)
MCHC - 34.2 (32-36 g/dL)
PLT - 235 (150-400 k/uL)
RDW-CV - 12.6 (11.7-15.0%)
MPV - 11.6 (H) (7.3-11.1 fL)

Neutrophil - 58.7 (40-70%)
Abs Neutrophil - 9.93 (1.8-7.7 K/uL)
Lymphocyte - 28.6 (22-44%)
Abs Lymphocyte - 2.40 (1.0-4.0 k/uL)
Monocyte - 7.9 (H) (0-7.0%)
Abs Monocyte - .66 (0-.08 K/uL)
Eosinophil - 3.8 (0-4%)
Abs Eosinophil - .32 (0-0.4 k/uL)
Basophil - 1.0 (0-1%)
Abs Basophil - .08 (0-0.2 K/uL)

SM Antibody - <0.2 (low:<1.0 AI)
ANA by EIA - 1.7 (H) (low: <1.5 OD)
RNP Antibody - <0.2 (low:<1.0 AI)
SSA Antibody - 0.3 (low:<1.0 AI)
SSB Antibody - <0.2 (low:<1.0 AI)
Centromere - <0.2 (low:<1.0 AI)
Scleroderma IgG AB - <0.2 (low:<1.0 AI)
Jo1 Antibody - <0.2 (low:<1.0 AI)
Ribosomal RNP - <0.2 (low:<1.0 AI)
Chromatin Antibody - <0.2 (low:<1.0 AI)
CRP - <0.3 (0.0-1.0 mg/dL)
Rheumatiod Factor - 8 (low: <20 UI/ml)
WSR - 2 (0-20mm/Hr)
Microsomal Antibody - <3.0 (low: <5.0 IU/mL)
Vitamin B12 - 710 (H) (221-700pg/mL)

Hep B Core Ab, total – Neg
Hep C Antibody IA – Neg
HBsAg – Neg
HepB Surface Ab Qual – Neg
HIV 1 & 2 Ab EIA – Non Reactive
Protein total - 7.3 (6.0-8.4 g/dl)
Albumin - 4.9 (3.5-5.0g/dL)
Calcium - 9.8 (8.5-10.5mg/dL)
Biliruben, Total - 0.7 (0.0-1.5 mg/dL)
Alkaline Phosphatase - 49 (40-150 U/L)
AST - 22 (7-40 U/L)
Glucose - 84 (65-100 mg/dL)
BUN - 13 (8-25 mg/dl)
Creatinine - 0.83 (0.70-1.40 mg/dL)
Sodium - 138 (132-148 mmol/L)
Potassium - 4.1 (3.5-5.0 mmol/L
Chloride - 104 (98-110 mmol/L)
CO2 - 23 (23-32 mmol/L)
Anion Gap - 11 (1-15 mmol/L)
ALT - 11 (1-45 U/L)
eGFR - >60 (no reference value)
MPA Serum IgG - 978 (717-1411 mg/dL)
MPA Serum IgA - 108 (78-391 mg/dL)
MPA Serum IgM - 110 (53-334 mg/dL)
MPA Serum Kappa - 786 (534-1267 mg/dL)
MPA Serum Lambda - 464 (253-653 mg/dL)
MPA Kappa/Lambda Ratio - 1.69 (1-3)
UMPA Interpretation: A definitive M protien is not seen. Albumin is seen.
Triglyceride - 51 (30-149 mg/dL)
12 hour fast: Cholesterol - 179 (100-199 mg/dL)
HDL - 63 (low: >55 mg/dL)
VLDL - 10 (6-40 mg/dL)
LDL - 106 (60-129 mg/dL)
TC:HDL Ratio - 2.84 (1.00-5.00)
LDL:HDL Ratio - 1.68 (0.50-3.55)
Glucose 0hr - 77 (65-100mg/dL)
Glucose 1hr - 184 (low: <200 mg/dL)
Glucose 2hr - 117 (low:140 mg/dL)

Thanks again everyone for your info and input.
I've decided that I'm just going to live my life the way I want and not focus on all the little details. I've spent so many years trying to find out what is wrong with me, and even with the SFN, no one really knows and I'm tired of spending my time on "IT" and not life.
I could be hit by a bus tomorrow so why focus in on this?

Thanks again and I hope you all find the peace and comfort you deserve!

--and that most of the results fall into "normal" ranges.

The presumption is that your autoimmune processes, which you do have evidence for--the elevated ANA, scleroderma, thyroid nodules--are the cause of your neuropathy, and certainly any of the ANA autoimmune vasculitic/connective tissue disorders can cause nerve compromise. (And, low thyroid function is also implicated in neuropathy). I wonder, though, if it might be worth it at some point to get titred up for some of the specific anti-nerve autoantibodies--anti-sulfatide, anti-myelin associated glycoprotein, and the like. If any of these were present it might suggest a somewhat different immune modulating regimen.

In the Useful Website stickies you can see good lists of these autoantibodies in the Quest/Latov paper:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

and also in the Liza Jane spreadsheets:

http://www.lizajane.org/NeuronalAntibodyTests.htm

as well as at the Washington University at St Louis. Neuromuscular website:

http://neuromuscular.wustl.edu/nother/autoantibody.html

Scleroderma has a specific blood marker. Many connective tissue diseases do not, but can cause substantial morbidity and mortality.

At this juncture, they have decided I have autoimmune autonomic neuropathy (and sensory neuropathy) and seronegative Sjogrens, which could just as well be a spondyloarthropathy. I have oncholysis which could be a psoriatic nail and lend itself to psoriatic arthropathy as well. My ligaments now are tearing hear and there. I have some connective tissue disorder with neuropathy, yet to be named.

I am on IVIG for the inflammatory neuropathy and it works some what for the numbness, and autonomic issues.

IVIG is tough to get. They approve me on a 6 month basis.

I can not take the other meds such as TNF blockers. I get very sick on drugs.

My first feeling was to panic, and I probably did. At this point, I feel I am not going to meet my demise immediately, however, I can relate to how you must feel.

Hang in there. Also, if you need a good neuro and don't mind traveling PM me.

Thanks again for the replies. Right now, my biggest issue is that I have no health insurance. I was able to get all these tests because the Cleveland Clinic has a program for uninsured where they pay all or part of your bills, based off your income, as long as it's medically necessary. My primary is great, and gets whatever he can under that "necessary" umbrella, but the $2000.00 per month treatments wouldn't be covered, because that is a prescription and they don't cover those. I can't get a second opinion from a different neuro because of the insurance issue.
I could see if they knew for a FACT that it was autoimmune - that would justify the treatments, but they are just guessing... that makes the very expensive treatment plan a "Maybe". Not when Neurontin and Lycira have the same "maybe" benefits.
I did get some of my results back - but not the biopsies, which is what I really wanted. The QSRT said I the response in the left foot and left forearm are reduced... My left foot, normal value is >.18, mine was 0.06 and my forearm value >.20, mine was .13, whatever that all means.
Will have to call and deal with that nurse again for biopsy results! She basically told me, in as nice a terms as possible that I should be grateful it's not something more serious, like this patient she has with AML who has a family and is dying. I'm quite offended by that since I just lost a cousin to AML in July!
ARGH!
Anyway, thanks again all!

If you have any skin pigment changes?

There is a bronzing of the skin that occurs with hemochromatosis, that is often mistaken for melasma in women.

Hemochromatosis is a hidden disorder, that shows up only when it is in serious stages. Often it is not tested for. But it deposits iron in the tissues, and may cause PN.

There are special blood tests for it. Kaiser-Permente HMO is now screening all patients for it. This is a genetic disease and not that uncommon.
http://www.hemochromatosis.org/
It is worth looking into.

and then some.
Again, I will urge you to touch base with the folks at IG LIVING magazine.. just web in the name and you will get to their site - They work with the MFRs to be sure that folks get their IVIG! I've heard feedback from many who have been helped.
As for 'hemachromatosis'? I have an immediate family member who 'had' it and then it went away..... I tested positive for it earlier last year ONCE! and never before nor after... I dunno, maybe I ate too much spinach before the testing? It's not an awful issue to have tho, just go 'give blood' monthly and it clears out that excess, until the next time. IF not diagnosed tho? Could cause lots of problems and damages.
OK lastly, I still have to ask IF they did any IMMUNE thyroid tests...looks like they did a detailed basic test, but not the IMMUNE ones. Not that an adjustment in thyroid meds is the only course of treatment, just the usual one. But that could explain a LOT in immune reactions throughout the rest of you! Know so, cause it happened to me. Only the immune issues w/the thryroid took a few other issues to crop up to be happening and get diagnosed. I will say that when I first got 'hypothyroid'? IT took me over 5 years of 'twiggling' the meds to get things right. Then I got the other immune neuropathy which sent things out of whack but not enuf to be declared big-time. Tho it felt like it at that time of life. I'll look up the Thyroid Immune tests or refer you to a site soon....
As for that NURSE? Well, just ask her to send you the FOIA release forms and to send you copies....and ask how much they will cost. IF it's over $40. for the whole shebang? Go to the hospital [if you can, hobble in? - more better? Walker, cane, or wheelchair-you get the drift?] and see what all THE Patient representative can do for you! While the Patient Rep works for the hospital? They do try to make us patients 'happy campers' and accomodate our needs..... I've used them to my advantage in the past amazingly so..... You can be surprised what you can get if you ask in a non-threatening way [AKA: sue] and just in a way to I want to know what all is going on? Docs ALWAYS appreciate curious and NICE patients... Even tho we are IMPATIENT at times? Being nice and curious goes far in docs estimations of US the patients!
Now, a basic question? Why aren't they doing the steroid route for starters? Usually that is stage one for treatments of immune neuropathies UNLESS something says no... That was my case...
Hang in there... lots going on I am sure! Have faith in yourself to persist in getting this all FIXED or at least, patched up? 's - j

MrsD, as a matter of fact, I have hyperpigmentation on my neck, forearms, chin and low back. The scleroderma specialist I saw in 2005 told me it was because of my morphea. I've had it since about 1978 though so not sure on that one. I'll look into this. THANKS!

dahlek, They ran for TPO antibodies. That was the Microsmal Antibodies that came back at <3.0 (value low: <5.0) so I read that as negative. Interesting to note, my father has a multinodular goiter as well as hypothyroid, and at least 4 of my cousins on dad's side are also hypo. The cousin who just passed with AML also had a large mass on his thyroid that was "ignored" because the leukemia was too aggressive. When I went to the neuro for the consult and he told me I had some kind of Autonomic Peripheral Nervous System Disorder, and order all the tests, I told him I was a little a little shocked and that "I thought you were just going to tell me it was my thyroid" and that's when he ordered the TPO. I was really hoping to get a script for Synthroid and could start felling better!

At Cleveland Clinic they have a thing called "My Chart" where the docs can post test results. It's a secured network that you log into. My neuro won't post to it, but I think I'm going to get in touch with my fantastic primary and ask if he can post those biopsy results since she forgot to send them with everything else and "I'd really hate to waste more paper and postage". My mother taught me to "kill 'em with kindness" so I was 'very grateful' with his nurse, thanking her for helping me understand. I just don't want to fake it again if I don't have to!

I did also ask her about starting with steroids, and she told me they don't do that for my type of SFN... I already knew better but didn't want to point it out!

I won't give up on getting to the bottom of this, I was just very frustrated the other night. I've been battling this since somewhere around 2001-2002. A four year misdiagnosis and all the tests that went along with it... I've even had a Heart Cath - at age 39 - looking to pulmonary hypertension as a cause of my fatigue! And now I'm getting, we know you have SFN (which explains tons of the symptoms) but not what's causing it, and all the lab results don't really tell much of anything! I'm still frustrated. I cleaned my kitchen and bath GOOD Friday, and could hardly get out of bed Saturday morning... I can't live like this.