Anyone here dealing with peripheral neuropathy?

I have had light chains checked but mine are fine, they can’t do the surgery to carpel tunnel syndrome. My husband had both hands fixed and it was a one day surgery?

Maybe you have. Narcolepsy on top of your RLS

@lynsorensen - never heard of "free serum light chains" -

Somebody mention an antibody that I have never heard of . I was going to look it up on google but can not find it in the thread again. If you see it let me know. It is all capital letters and driving me crazy but can not find it as I go through the thread
l work in a lab and that really concerns me that I hsve never heard of it. Will keep looking. Thank Ann

@user* I wrote one down, would this be it? FGFR3 antibody

Try researching Alpha-Lipoic Acid and Acetyl L-Carnitine. Both are suppose to help alleviate this condition. Good luck!

Maybe TS-HDS?
Study Description
Go to sections
Brief Summary:
The objective of this study is to develop a rationale for the selective treatment of small fiber neuropathy with immune globulin (IVIG) in the appropriate patients.
The investigators hypothesize that individuals with auto-antibodies targeting neuronal antigens (TS-HDS and FGFR3) and confirmed evidence of small fiber neuropathy (by skin biopsy analysis of intra-epidermal nerve fiber density) will have an improvement in both nerve fiber density and pain after treatment with immune globulin.
The co-primary endpoints will be a change in neuropathic pain (by VAS pain score) and a change in intra-epidermal nerve fiber density (by punch skin biopsy).
The data gained from this pilot study will establish a rationale, with an appropriate screening test, for the use of immune globulin for the treatment of small fiber neuropathy.

Condition or disease Intervention/treatment Phase
Small Fiber Neuropathy
Idiopathic Peripheral Neuropathy
Drug: Intravenous immunoglobulin
Drug: 0.9% Sodium Chloride
Phase 2

Detailed Description:
Small fiber neuropathies, and mixed small and large fiber neuropathies, have many potential causes including diabetes, vitamin deficiencies, environmental and toxic exposures, HIV, autoimmune and paraproteinemias.
However, despite this broad differential at least 30% of cases of small fiber neuropathies remain idiopathic. There is therefore a growing interest in the potential for using IVIG in small fiber neuropathy without direct proof that the disorder is caused by immune reactions. We have recently uncovered two novel autoantibodies, TS-HDS and FGFR-3, that are targeted again peripheral neural structure. TS-HDS is a disaccharide component of glycosylation of heparin and heparin sulfate.
Patients with elevated levels of IgM against TS-HDS display clear small fiber loss with IgM deposits around the outside of medium- & larger-sized capillaries with C5b-9 complement deposits. FGFR-3 is a secreted cell surface receptor; genetic defects of FGFR-3 are linked to achrondroplasia and other bony abnormalities.
The antibodies to TS-HDS and FGFR-3 are detected in up to 20% of patients with otherwise idiopathic small fiber neuropathy, but are rare in patients without small fiber neuropathy.
Dr. Levine (a co-investigator on this project) recently presented 3 cases of small fiber associated with elevated levels of auto-antibodies to TS-HDS or FGFR-3 who were treated with IVIG at 2 gm/kg/month for 6 months. He examined skin biopsies for intra-epidermal nerve fiber density and patient self-reported pain scores at baseline and after six months of therapy. All 3 cases showed marked improvement in pain scores. The average reduction in pain was 54%. In addition there was a clear increase in the intra-epidermal nerve fiber density (IENFD) after 6 months of therapy. Pre-treatment IENFD was 1.6, 1.7, and 2.4 at the calf. After 6 months of therapy the IENFD was 8.4, 5.7, 3.3 respectively (these are clinically significant improvement in nerve fiber density.
The investigators believe these anecdotal cases suggest that TS-HDS and FGFR-3 antibodies may be a marker for a group of SFN patients that are immune mediated and may respond to IVIG. (This case series was presented as a poster at the American Academy of Neurology meeting in 2017)

New to this website and trying to catch up on all of the good information here. Is there a test TS-HDS and FGFR-3 antibodies?

Aware that Dr. Oaklander from Mass General Hospital in association with some other doctors is doing a double blind study with idiopathic patients with small fiber neuropathy. I think that they should be looking for volunteers soon. This study follows the study that came out this year showing IVIG helps 70%+ of people with small fiber neuropathy with no positive inflammatory or autoimmune markers.

Hi @articmark -- I think the test for the TS-HDS and FGFR3 is a Neuromuscular laboratory sensory panel. It's listed in this Neurology.org doc - A comparison of different laboratory and clinical findings in Small fiber neuropathy (SFN) (P1.456) here:
-- http://n.neurology.org/content/90/15_Supplement/P1.456

John

Yes I've had physical therapy seen chiropractor s.