I was dx with RSD and PN almost 7 years ago. Today I saw a new pain doctor who suggested I have a skin biopsy because he feels I have small fiber neuropathy. I am very concerned about this test due to my RSD which he was also concerned about but feels if I did have small fiber neuropathy IVIG could help me. I still would have to treat the RSD too with other treatments. Can anyone share with me what the skin biopsy is like and also if you have had IVIG? Thank you for any help or thoughts

--is itself a fairly simple and not particularly invasive procedure; the tough part is getting the samples taken to a lab/facility that has the correct staining equipment and electron microscopes to do an accurate analysis.

What happens is that a small shot of local anesthetic is given in the region from which the sample is to be taken--typically, samples are taken from the side of the upper thigh, the side of the lower calf, and sometimes from the fleshy area right above the elbow (these are the areas which research has "standardized")--and then a small skin sample, typically about three millimeters in diameter and about a millimeter in thickness, is cut out. The procedure takes no more than a few minutes, and a pressure bandage/antibiotic is then applied, and one may be observed a few minutes to make sure bleeding stops. The samples are then sent to be analyzed for intraepidermal nerve fiber density and condition.

I've had this done several times--one of the good things about skin biopsy is that the same general areas can be sampled repeatedly over time and the results compared to see if one has small fiber neuropathy and how it is progressing or reversing. While I know many things can trip off RSD/CRPS flares, this procedure happens so much on the surface that I think it would be unlikely to disturb the body enough to cause one.

I have not had IvIg as no other testing in my case indicated there was direct evidence of autoimmune reaction, though autoimmune mechanisms are one of the leading theories for many people with idiopathic small-fiber neuropathy. Usually IvIg is used in those people who have conditions such as chronic inflammatory demyelinating polyeneuropathy (CIDP) in which autoimmune attack on the nerves can be demonstrated.

Thank you for your thoughts. Yes my doctor feels I have auto immune condition going on because of all the ongoing health issues in addition to the pain, PN, and RSD. I am not fearful of needles but because like I said even a finger touch on my RSD areas sends me into a horrible state. The pain when I had my EMG/NC was so horrible but not just during but after.
Do you have small fiber neuropathy?
Thank you again

Hi daniella....my name is Debi and I'm from Georgia.....I am 51 and have small fiber neuropathy diagnosed via skin punch biopsy.....Glenn described it perfectly. They only took 2 samples right about my ankle on my right side. I do not have RSD. My SFN is diabetes/chemo based. You may need the test to help get insurance approval for the IvIG infusions.

Please keep us posted.

Debi from Georgia

Thank you for your reply. Yes that is what the pain doctor said that for insurance to cover IVIG that you need the dx and that IVIG is ongoing and expensive.
Debi may I ask how you developed small fiber neuropathy? Do you have auto immune condition?

I was already pre-diabetic going into chemo and had some burning toes after working all day but never paid much attention to it. I had 6 rounds of carbo/taxol treatments, my A1C went up during that time and that is where my small fiber neuropathy is coming from. Some people recover that have this and it just goes away but my skin punch biopsy had a scale of 0 to 15 and I have 0.00 and 0.06 on the 2 punches I had. The dr said he could work with regenerating the nerves if the results had been 4 to 7 but not with zero A and C Fibers. Nothing to do with autoimmune.

I have read previous posts that talked about how hard it was it get the IvIG treatments approved by insurance so thought I'd pass that along to you

Good luck !

Debi from Georgia Still have snow on the ground !

Hi thank you so much for your reply and I am sorry for your struggles. The pain doctor said it is hard to get the approval too about the IVIG and that I definitely would need the dx.

How are you doing ? Have you decided yet whether you are going to have the skin biopsy done ?

Please keep us posted...we care about you

Debi from Georgia

Hello Daniella. I was diagnosed with small fiber neuropathy from a skin biopsy done at John Hopkins this past November. It is very quick and was explained perfectly in the previous post. Since the regular nerve conduction studies do not pick this up, it is definitely worth it if you want to find out the extent of your condition and pursue the IVig further.

I also just had round 5 of IVig therapy as there is evidence that I also have autoimmune activity. It is difficult to get approved for insurance coverage, but if your doctor reports the right things to your insurance it is possible.

Honestly, I do not feel the IVig has made a huge difference in the neuropathy itself. Everybody reacts differently depending on what is actually causing your underlying condition. I will say my energy levels after the IVig are better but the pain and numbness is not significantly different. The autoimmune specific symptoms seem to have improved somewhat. As posted earlier, from what I gather the treatment is intended to help with autoimmune activity among other things.

Have you decided what to do yet?

Thank you for all your sweet thoughts. Sorry for my late response. I just started many new meds at one time and have been feeling not so good.
I have still not decided about the biopsy. I am hoping to feel some relief with these new meds. I am not fearful of needles but just the concern because I can't even allow a finger touch on my rsd area.
Even prior to this doctor and after my RSD and PN dx I have felt I have more undx condition because I have just had too many health problems over the last years at such a young age too.
Cat I am sorry you did not benefit from IVIG. I have a friend who also had the IVIG and did not benefit.
Thank you again and I will keep you updated.