TS-HDS Antibody and Small Fiber Neuropathy

I would like to join your group. Could you please invite me? Linda Tripp I was diagnosed with TS-HDS small fiber neuropathy several months ago and am trying to find as much about what helps as I can. Thank you

Hi @lltripp2455, Welcome to Connect. Since you can post, you have officially joined Mayo Clinic Connect and are part of this and any group or discussion where you post. I'm glad that you are trying to learn more about your condition. That is a great first step. The two best reference sites I've found helpful for learning about neuropathy are:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You might also want to read through the following discussion to learn what others have shared helps them:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing a little more about the symptoms that are the most troublesome and any treatments you have tried?

Hi @lmcfm1, The first time I had heard of the TS-HDS antibody was when you mentioned it in your last post and I posted the following links that I found. You can also do a search on Google Scholar (https://scholar.google.com/) to see if you can find more information. Hopefully some other members may be able to provide more information on TS-HDS antibody testing.

Several Atypical Presentations of TS-HDS Associated Neuropathies: https://n.neurology.org/content/86/16_Supplement/P6.269
One to possibly watch – IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS or FGFR-3 Antibodies
— https://clinicaltrials.gov/ct2/show/NCT04153422

I’m not sure this is the right section to ask this question but…I have intermittent pain on the end of my big toe that feels like it is on fire (that’s the best way to describe it but the pain isn’t that severe). Does that sound like the initial stage of peripheral neuropathy?

Hi Rita @ritabtripp, It sounds similar to the pain I had with an episode of gout quite a few years ago. It started in my big toe on the right foot and gradually got to where it was difficult to walk. I was diagnosed with gout and given Colchicine which did the trick for me.

" Big toe pain is often the result of injury or minor underlying medical conditions. Arthritis, fractures, and gout may all cause big toe pain. Most cases of big toe pain are easily treatable with over-the-counter (OTC) remedies. However, some causes, such as sesamoiditis, may require more in-depth clinical treatment."
-- Big toe pain: 7 causes, other symptoms, treatment, and more
https://www.medicalnewstoday.com/articles/big-toe-pain

I had looked at that possibility but I wouldn’t think it is gout - it is the end of the toe and not the joint that is painful. Plus, I’m vegan so I wouldn’t think my diet would contribute to the problem. Does it sound like neuropathy?

Hi everyone! I hope this morning starts you off with calm nerve fibers and some relief, even if small. I’m excited (I know, weird choice of word) that there is a group specifically for this rare type of SFN! I was just dx about a month ago and already felt alone as not much research is out there on it! I am fortunate enough to have a Neurologist that has written some papers on it and I would be happy to share! Anyone finding info on why this antibody does what it does?

Also, does anyone in this group happen to have any metal implants in their body? I have a titanium dental implant and my symptoms started 8 months after placement… I just was dx with an allergy to titanium sulfate… I know metal can do crazy things to the body. It’s a side theory I have on a possible “cause” but I may be going down a rabbit hole… any thoughts would be greatly appreciated.

I'm getting a melisa test to test for a reaction to various metals. Titanium does well with this test where as the skin patch test does not work with Ti. Did you have this test also know as a LTT test it is out of a lab in Chicago. I got SFN 1 year after a hip replacement. I did have a very high rh factor too.

Its pretty much the same test. Waiting on results. Hip transplant oct 2020 5 months out I had pain in the hip that i thought was the illiosopas however no real injury. 3 months later had unusual deeper pain in the hip when sitting or laying flat that went away when I lay on my stomach still have this pain. Jan 2022 weak legs ( lightheaded head aches tachycardia brain fog that only lasted a month) March 2022 the bottom of my feet started to burn lower hair started to fall out and puffy feet In May leg pain with weakness that's getting worse to today. I had a lot of strange things like 2 lumps wrist and shoulder in July 2021 and ruq pain (ct scan was good ) and bags under my eyes. Now my stomach started hurting a few months ago, eating a lot of eggs drinking raw milk avoiding spiced foods. The leg pain is the worst and the feet burn less at night, which is odd, not a major issue. What was ur neuropathy like ? Test results ? How high was the index on Ti ? Only neg. blood test high rh factor 146 125 96 (igg or igm) would like to have ts-hds done to narrow it down. Google titanium autoimmune disease second link is a good article. Oh and my shoulder hurts very sharp pain for the last year and arms fall asleep easier when just raised while sleeping. I'm a mess of pain but somehow happy that I can sleep well. What are the main differences post implant ? Thanks for ur input this is such a rare thing that all responses are very important for ppl with similar conditions.