TS-HDS Antibody and Small Fiber Neuropathy

My 13 yo daughter was recently diagnosed with positive TS-HDS antibodies. Are there any doctors anyone can recommend that are familiar with this and possible treatments etc? I’m having a lot of trouble finding information online..thank you

Welcome @pandep, Earlier in this discussion @lilotter mentioned a doctor in a post, here is the direct link to the post - https://connect.mayoclinic.org/comment/312782/. You are right about it being difficult to find information on some of the more rare types of neuropathy. Here are a few articles I posted earlier in the discussion that I found using Google Scholar (https://scholar.google.com/) that you might find helpful.

Dysimmune small fiber neuropathies – AL Oaklander — "… dysimmunity seemed eminently plausible given the well-documented immune-mediated neuropathies and links … in Boston for SFN associated with autoantibodies to TS-HDS and FGFR3 …and trial existing and new therapies for apparently dysimmune small-fiber polyneuropathy …"
— https://www.sciencedirect.com/science/article/pii/B9780128145722000108

Clinical characteristics of fibroblast growth factor receptor 3 antibody‐related polyneuropathy: a retrospective study — "… fiber neuropathy associated with FGFR3 and TS-HDS may provide further evidence regarding …(INCAT group), Clinimetric evaluation of a new overall disability scale in immune mediated … Dave A, Smith J. Use of Intravenous Immunoglobulin in Small Fiber Neuropathy associated …" — https://onlinelibrary.wiley.com/doi/abs/10.1111/ene.14180

TS-HDS and FGFR3 antibodies in small fiber neuropathy and Dysautonomia: https://pubmed.ncbi.nlm.nih.gov/33792960/

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

Thank you John.
Yes -we are hoping to gather information and names of knowledgeable physicians in order to come up with a plan. This is all very new to us. We received her lab results yesterday after her dealing with episodic distal arm/ leg pain for the past 3 years. We are trying to process it all

Another really good source for neuropathy information is Neuropathy Commons - https://neuropathycommons.org/neuropathy/neuropathy-overview

Last year I was treated with Solumedrol. It was successful at bringing my TS HDS antibody level from 34,000 to 11,000. In February 2021 I had a tapering dose of Solumedrol starting at 1000 mg at 1x/week and tapering down to 100mg over a 12 week period. It did not improve my pain but improved my weakness slightly. It brought my antibodies down to 11,000. I just started my second round of treatment ( 10 months later). The side effects have been minimal so far. Hoping for the best.

Hello - I recently tested positive for TS HDS antibodies at a level 11,000, which my neurologist says is not significant given that it is on the cusp of normal (which I believe is 10,000). Would anyone be willing to share their TS HDS antibody level for comparison (thank you already @lassen!)?

For reference, my FGFR3 autoantibodies were normal. I've been experiencing neuropathy symptoms since my COVID vaccine in April 2021.

Welcome Erin, @erin2288, Glad to see you have already connected with @lassen. @carlyschneider, @pandep, @laureen8844 and @bogibus have also posted about TS HDS antibodies and may be able to share their numbers with you. Neuropathy Commons also has some good information along with some reference links on the site here:

-- Autoantibodies and Small-Fiber Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy

You mentioned in your previous post that you are on a wait list for an NIH clinical trial or study. Can you share a little more about the study? Is it in active status but just not recruiting now?

My daughter’s TSHDS level was 17,000. Negative for all other antibodies.

My TS-HDS was at 34,000 at the time of first treatment.

My TS-HDS was 34,000 at the time of first treatment