I finally have a formal diagnosis of autoimmune small fiber neuropathy.
The autoimmune part definitely makes sense because I have the presence of autoimmune D in my body and have had psoriasis since I was 18. Also, the way in the past the noticeable symptoms have come and gone since 2010. I took Humira for psoriasis for close to 10 years and it could have caused the neuropathy. Humira also masked the symptoms...
A skin biopsy of my calf was compared with last years specimen results and the normal population and showed that I had a significant decrease in sweat gland nerve fiber density.
I am still left to wonder about whether I really have dysautonomia, but I did not show the correct signs on the various tests given at Vanderbilt. But, my symptoms were the best they had been in 2 years.
The doctor is requesting IVIg therapy again from Aetna, but they have previously denied me twice.
If there is anyone else on the site that has Autoimmune mediated neuropathy that can share any information with me please do so.

Thanks
N1

Is that going to make a difference in treatment?

Doc

Yes it will...to help get approval for the IVIG, for one.

en bloc
That is what the doctor says, that now we have a better than average chance of getting approved for the therapy. I am extremely scared of the therapy, but I am willing to try it if helps.

Have you ever tried IVIg? If so, did you have any complications?

Thanks,
N1

nervous

IVIG is the most natural treatment there is...there is nothing to be scared of

potential benefits far outweigh the risks

if your Dr is willing to fight your ins co for your right to try it for your autoimmune sfn, bless him

I was dxd with cidp madsam....had 22 IVIG infusions over 14 months....am now no longer "active" with cidp per emg...have been off IVIG now for for almost 5 months...so far no relapse...am still knocking on wood

only problem is that I believe IVIG still does NOT have FDA indication for sfn....so that gives excuse for your ins co to play the deny card

still I believe IVIG can only benefit you....hope your physician keeps fighting your ins co for your right to try it

Nervous,

Yes, I have had IVIG...9 years for immune deficiency. Then suddenly I had a horrific reaction when we were upping dose for neuropathy. I got a severe case of aseptic meningitis. It is a fairly rare, but severe, complication possibility. I stopped infusions after that, until 5 months ago. My immune deficiency was so problematic that it was worth trying again even though my risk of the meningitis would increase (since I had it before). So far I've done ok, but the dose for immune def. is lower than that for neuropathy. The lower dose has not been helpful for the neuropathy...but my neuropathy (now know to be from Sjogren's) is not typically treatable, since it's from damage to the dorsal root and autonomic ganglia.

Insurance will always try to find a way out with this treatment due to it's cost. But I don't think you'll have a problem if you have a confirmed diagnosis.

I have Aetna insurance and they do not list Autoimmune SFN as being a medical necessity.
I hope my doctor can get it approved, but Aetna is really bad about denying due to codes, etc.

You're right, some insurnaces are harder then others to get approval. The insurance will try to deny right off the bat, but give your doctor a chance. Doctors are getting better at playing this game too and know what & how to submit to get what they want. Keeping your fingers crossed doesn't hurt either.

I hope you are right...
I checked Aetna's clinical policy bulletin on IVIg and autoimmune mediated neuropathy is not listed.

http://www.aetna.com/cpb/medical/data/200_299/0206.html

I just got approved for IVIg today and will hopefully be getting the treatment within the next few days. I having been fighting for this for over a year now and finally the approval code comes in!
My doctor said that I should take a baby aspirin the morning of and benadryl and plenty of fluid while I am having the therapy.
Does anyone else that has had IVIg therapy have anything that I should do or look for before or during treatment? So far I am told I can pretty much bet on having a headache as a result.

Thanks,
N1