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TS-HDS Antibody and Small Fiber Neuropathy
Neuropathy | Last Active: Nov 13, 2023 | Replies (156)Comment receiving replies
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!
Replies to "I just joined myself and saw your post. I have TS-HDS immune-mediated small fiber neuropathy too,..."
Yes, I would like to join- thank you. Since we are all dealing with this on a daily basis any information is helpful.
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!!
@lilotter hi. I would love to join the FB group. I just logged back on to a "game" acct i had set up years ago. It is under the name Meg Smith-Biel. Do you need any other info to send the invite?
Thanks,
Megan
Hi, I just came across your post and I was wondering if I might be able to get in on that fb group. I haven't found anybody anywhere that has even heard of TS-HDS even my own doctors. They are at there professional limit as far as knowing how to help me. I've been suffering in pain for 4 years now and have felt so very alone with no hope. So I would love if I could be part of a community of people with my same condition.
Hi, I too have this antibody and would be thankful if I could join this facebook group. Thank you
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
i have tshds small fiber neuropathy with an Igm monoclonal protein but have other symtoms like red eyes incomtinence and itching but the pain in horrible in feet and hands and now in my teeth urinate constantly and leak out does this fit your symptoms
Hello, can you add me to Facebook group? Thanks Joe
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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?