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TS-HDS Antibody and Small Fiber Neuropathy
Neuropathy | Last Active: Nov 13, 2023 | Replies (156)Comment receiving replies
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.
Replies to "Hello - I recently tested positive for TS HDS antibodies at a level 11,000, which my..."
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.
Mine were 17,000 the one time I've had them tested about a year ago at Duke. My FGFR3 values were slightly elevated (4k). I'm 56 and have been dealing with intermittent SFN symptoms about 13 years (feet, hands and chest) and received a formal diagnosis of SFN last year. Review of my labs for past decade or so reveal that I have been slightly creeping into the pre-diabetic range. Therefore, I'm trying to radically address that with diet and exercise. Also experimenting with taking a lose dose of Metformin. During periods when symptoms get bad, I start back up on my low dose of Gabapentin which definitely helps to take the edge off. I do not know whether intermittent use of that medication is recommended but it seems to be working for me and hopefully helps to avoid building up intolerance to the drug so that it is more effective when my symptoms get worse.
Where did you get testing done for the FGFR3 and TS HDS antibodies? Can any lab do it? I requested these tests from my neurologist at Hopkins and he’s never heard of them. Said he didn’t know where to get me tested for it. I’ve been dealing with neuropathy since my first Pfizer vaccine 9 months ago.
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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?