Hello

I am new and I have been diagnosed with small fiber neuropathy via skin biopsy (ankle and thigh).

It is thus far idiopathic. The tests I have had done thus far are:

MRI brain/head-normal
paraneoplastic evaluation-negative
b12-normal
celiac-negative (had all different antibody tests done, plus biopsy)
ANA-negative, 3 times
Sjorgen's-negative
fasting glucose-runs high 70's to 80's
A1C always around 5.2
Amyloid workup and biopsy-negative
liver and kidney function-perfect
cardio work up-fine
Lyme-negative
Thyroid-I do have hypoT-but it is well controlled, and my complete thyroid labs come back fine
CBC and CMP-all good
CRP/ESR-all normal
IGM/IGG/IGA?monoclonal causes-negative
I have not taken any of the known drugs/meds that cause neuropathy (looked them up on this site and other neuropathy sites)
have not yet been evaluated for metals or genetic causes

The only thing labs turned up was a B6 level 2 times the normal upper limit. I did take an Emergen C packet (vitamins) everyday for months by that point, but it only has 10mg of Vit b6 in it. I stopped it last week when I was told about my B6 levels. I suppose it is a possible cause.

I have yet to get an EMG/NVD test, that will probably be next, so I don't know if I just have small fiber or if there is more.

I deal with burning skin (pretty much everywhere), and slight redness with it (no swelling. I also get pins and needles feelings, stocking/glove feeling, twitching. This all began back in June-so 6 months or so.

One off thing, is I have noticed my skin (especially hands, feet, eyelids) has become really transparent-I can see my veins like a roadmap. The veins aren't protruding-just much more visible.

Has anyone noticed skin or vascular changes? I am doing my best not to be scared. I am only 34, so this is a lot to take in, and of course the fear of it getting worse is hard to deal with. I know this is a long post-but it feels nice to talk to people who understand. My husband and I wanted to buy a house and have a baby-and now I don't even know what I'm going to be capable of at this point.

Welcome ellsac.

--for antibodies specific to peripheral nerve, that could be done, as well as a few other tests (the skin situation that you refer to sounds like you should be checked for scleroderma, for instance).

See:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

Thanks for the responses.

I am fortunate enough to work in NYC, so I have an appointment with Dr. Russell Chin on 12/23. I researched my behind off trying to find my best shot at a diagnosis if one is available, and I think he might be the ticket. I've liked what I've read.

My ANA was negative, and back in April (for some muscle pain), more specific Scleroderma tests were run and also negative. Perhaps the doctor will want to try again.

I was seeing Dr. Daras at Columbia Pres, which also has a great neuropathy program, but it is so hard to get to see him-appointments are 3 months in between, and at this point when so much is unsure and I'm nervous, I really need a doctor to be more attentive. I am hoping Dr. Chin will be a good fit.

I'd suggest getting the MTHFR DNA testing to see if your
failing to methylate B12 and folic acid properly.

Ok-I can ask Dr. Chin about that. I just ordered those to start taking orally, but I will hold off taking them for a few weeks to see the doc so my levels will be accurate.

Welcome ellsac,

For what it's worth, my fasting glucose is 80 and my A1c 5.2%, but other testing shows glucose issues. I've been self-monitoring at home which shows a definite problem.

If you want to pursue possible problems in this area, you can get a very inexpensive glucose monitor from a place like Walgreens (and get a full rebate on the price) and get just a few strips to check things out.

In a "normal" person, glucose shouldn't rise about 140. An apple sends me into the 160s, and a high carb meal does the same and I stay there for hours.

In consulting with some diabetics on forums, I've been told I'm "on the spectrum" and any A1c reading out of the 4s is a sign of trouble. They also said by the the time your fasting glucose is in the pre-diabetic area of 100, your pancreas has already taken a hit. It's apparently a very poor screening parameter as it's late to the party, so to speak.

Whether or not it's the cause of my SFN is a matter of debate, but given that something like 50% of all people with SFN are diabetic or pre-diabetic, I certainly am not ruling it out.

Janie

--I highly recommend Dr. Chin, who helped me get a handle on my unusual acute-onset body-wide small fiber presentation when no one else could really figure out anything about it back in 2003 (though we never did find a cause).

Dr Chin gave me the most thorough physical I ever had during my first visit (not just a neurologic examinatino).

He also, unusually for neuros, has a sense of humor.

Hey! I know what it is like to be deathly scared of unexplainable nerve pain. Long story short to spare you hours HAVE HOPE, I was 18, yes 18 when I began showing sensory and very slightly motor neuropathy and entrapment. Tingling in all limbs, fasciculations, tremors...etc. Every test you can name---negative.

Freaked out for months about why and how and what, all my symptoms came on within 3 days and guess what I am 24.5 years old now and it hasn't changed. In a good way. I've learned to live with it and honestly I don't think twice about it, really ever. I forget about it most times. I worried about MS and all that jazz but my symptoms never progressed. What I'm saying here is I remember crying in bed hopeless and clueless and I worked my way around it because mentally I made very convincing symptoms exactly what they sounded. Like all things in life sometimes you have to live and let live. I'm not telling you to do a 180° and change your attitude because that is not how the human brain works, but I can promise you a lot more people make it out of this than you'd ever think. You're young, simply JUST KNOW to hang on and If symptoms don't worsen you will naturally build confidence just like you've naturally responded with fear.

Trust me my drs were dumbfounded and I'm more active and happier than ever. You are in my prayers you will do this!!!!!

Welcome mrobin44.