TS-HDS Antibody and Small Fiber Neuropathy

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

Thank you for the information which was helpful. I was hoping some members who have this same anti body might respond too. There seems like there is not much information out there regarding this particular anti-body and personal stories of whether IVIG helped, and how many treatments they had, etc, I’m scheduled soon so will be able to provide feedback.

I just joined myself and saw your post. I have TS-HDS immune-mediated small fiber neuropathy too, and you are right, it is very hard to find infomation about it. The only thing that has helped my pain is physical therapy and medical marijuana. I know some people are seeing some success with IVig therapy but I have not been able to go there yet. I was invited to join a Facebook group for people seeking information about TS-HDS neuropathy and if you are on Facebook and would like an invite let me know. I have learned a lot by joining and it's a good place to pool information. I hope you find the answers you seek; this is a very difficult illness to battle!

Hello @lilotter, Welcome to Connect. Thank you for sharing your experience and what has helped you. You are right about it being difficult to find information on some of the more rare types of neuropathy. I did find a couple of articles using Google Scholar (https://scholar.google.com/) that are over my head but you may find some value in them.

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

Have you made any lifestyle changes that have helped?

The Dr. Oaklander referenced in one of your articles has worked with Dr. Khosro Farhad, whom I was fortunate enough to see in New Hampshire. He was the one who diagnosed my SFN as TS-HDS mediated. Some lifestyle changes that have helped me have been giving up gluten and dairy, starting a regimen of low dose naltrexone and pool therapy. The latter is the best kind of exercise for my chronic pain. It's difficult right now with gym closures but I hope to get back this fall. Right now I am swimming in the very cold Maine ocean or my unheated pool. Not quite as therapeutic!

Thank you for the information. What is the naltrexone? Also, have you ever tried IVIG?

Yes, I would like to join- thank you. Since we are all dealing with this on a daily basis any information is helpful.

Hi @lmcfm1 I recently happened to be looking into this myself for my wife who has peripheral neuropathy. I first heard about it from a discussion on Mayo Connect that talks specifically about it. Here is what I have learned: first of all, naltrexone is a drug that has been used since the sixties to help drug and alcohol addicts with their addictions. It binds to and therefore blocks the endorphin receptors in the brain and therefore does not allow drugs or alcohol to interact with those receptors thus removing the ability for the addict to get high. It is prescribed and administered in 50 mg doses. What @lilotter referred to was low dose naltrexone, which is an off label usage of naltrexone administered in 1.5 - 4.5 mg doses, which must be specially made for you by a compounding pharmacy. . Because it is in a much smaller dose, it works in a much shorter time period (about 4 hours) and is taken before bedtime so that is is active from about 2 hours to about 6 hours after going to bed, thus it is active at a time when your body is normally producing the most endorphins that it does during the 24 hour day, in the middle of your sleep cycle. During this time it blocks the endorphin receptors in the brain which causes the body to try to generate more endorphins to increase the supply which it thinks it is in short supply of. This extra endorphin supply then helps you throughout the day by modulating your immune system as well as helping to reduce inflammation in your body. Many people have benefitted (and a certain percentage have not) with various conditions, such as neuropathy and fibromyalgia. There are a few side effects but they are mostly mild for most people and none seem to be life threatening. One thing, you have to be careful with your diet while taking it as it can lead to an overgrowth in candida albicans (which is no fun, I have dealt with that before). You may need to take it for a few months before you notice an effect. There are some good website with info on it, so do some research. Best of luck. Hank

Hi lilotter! I'm on Facebook and would like an invite to join the page discussing TS-HDS neuropathy. I was diagnosed about a year ago; plasma exchange didn't work and now I'm in round 4 of IVIg. Jury is still out. Diet and lifestyle do make a difference. I'm on a very clean diet (and no gluten, dairy, sugar), and also am trying to avoid stress--that's a big trigger for me. Many thanks!!

Hello @auntiegen, Welcome to Connect. No need to join the TS-HDS Antibody and Small Fiber Neuropathy. All you have to do is post and share your experience or ask any questions you have. If you want to receive a notification for anytime someone posts in the discussion, scroll to the top of the discussion and click the +Follow link at the bottom of the discussion.

Thanks for sharing what helps maintain a clean diet. I think stress can be a trigger for a lot of people. I find that exercise and staying away from watching the news on TV help me keep my stress levels down. Here's some tips I found that you may already know about but may help a little.

16 Simple Ways to Relieve Stress and Anxiety: https://www.healthline.com/nutrition/16-ways-relieve-stress-anxiety

Have you found something that helps you reduce or relieve stress?