TS-HDS Antibody and Small Fiber Neuropathy

Posted by lmcfm1 @lmcfm1, Jun 5, 2020

Hello Everyone, I was wondering if anyone knows any information about the TS-HDS antibody test for neuropathy and what it means. After extensive testing, I had positive results for the antibody, and am dealing with small fiber neuropathy. If anyone has this antibody, can you recommend any treatments?

Interested in more discussions like this? Go to the Neuropathy Support Group.

pamela22 | @pamela22 | Mar 4, 2023

In reply to @jasonarnsberg "Has anyone had IVIG treatments" + (show)

Yes I has my first one on Monday Feb. 27th for immunoglobulindeficiencyanemia. My blood level of IGg was 194. Doctor said anything under 400 requires treatment. I am getting 400mg/kg every 4 weeks. I was very well hydrated and apparently a must to prevent nasty headaches which can land you in the emergency room I've heard. There is a Facebook site that helped me so far called IVIG saved my life or something like that. I believe my deficiency was related to chemo drugs. I'm upset right now as I don't want this to be for life as some people say it is. I had a headache for 2 days but kept Tylenol and Advil on board. Apparently it is used for many things. I never knew all this and I am a nurse since 1982. Not working now. Hope this helps. This is my first post so hope I learn to use this site. Best wishes to you.

luckymom77 | @luckymom77 | Sep 13, 2023

Hi. I too was diagnosed with SFN with the TS- HDS antibody. I just got the results of the antibody test back today. I was diagnosed with SFN in 3/2021. I started looking for treatments, and as my neurologist stated in my results, most insurance companies do not recognize the treatments other than medications , and will not pay for the costs of the new treatments that have been discussed. If you see anything or hear anything let me know. I am on 50mg 3 times a day of Lyrica and 150mg of venlafaxine a day and 50mg of Nortriptyline at night

Rachel, Volunteer Mentor | @rwinney | Oct 18, 2023

Hi @conrad0077, welcome. Thank you again for your private message. This conversation has a wealth of knowledge about TS-HDS antibody and IVIG therapy. If you scroll, maybe even start at the beginning, you'll find great links and info from my fellow mentor @johnbishop and be able to connect with members like @luckymom77, @pamela22 and @lmcfm1 (who started the conversation back in 2020) and most likely find shared experiences and support.

When is your next neurology appointment? Do you plan to discuss a treatment plan?

theagent49 | @theagent49 | Oct 29, 2023

In reply to @lilotter "I just joined myself and saw your post. I have TS-HDS immune-mediated small fiber neuropathy too,..." + (show)

Hello, can you add me to Facebook group? Thanks Joe

danye1 | @danye1 | Nov 8, 2023

In reply to @lonestarmom1 "I’ve been diagnosed with SFN. I was completely healthy but after taking my second COVID vaccine..." + (show)

Hello! Which lab performed your TS-HDS blood work? Only Washington University in St Louis, MO, is the lab my neurologist knows of but they recently discontinued offering the test. Mayo Clinic does not offer it, either. So, if you have found a lab, I would so appreciate knowing. Thanks!