TS-HDS Antibody and Small Fiber Neuropathy

I also have balance issues and dizziness. I was diagnosed with immune mediated SFN and TS-HDS antibodies in 2018. I’ve developed dysautonomia as well. I’m seeing Dr’s at Mayo-Rochester for the first time this coming Aug. I hope to get more answers as to what is causing this. I was taking Lyrica for over a year and it seemed to help with the symptoms of pain but caused the dizziness to intensify. Good luck and please let us know how you’re doing

Hello @lbo615, Welcome to Connect. I see that you have already connected with @nastaranh2000 who has similar symptoms along with SFN and TS-HDS antibodies. Some of the medications used to treat the pain do have side effects so it's good to make a list of your questions for your upcoming Mayo appointment. You may want to take a look at this plan your visit information on the Patient Revolution website here - https://patientrevolution.org/visit-tools. It has some cards you can print out and take with you so you don't forget the questions you want to ask.

Can you let us know how your appointment goes and if you get any of your questions answered?

Thank you very much for your response. How long you have had the dizziness and balance issue? I also stopped Gabapentine sonce it made me more imbalance. They are going to give me IvIg. Is this helpful? Have you been treated with this? Thank you.

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?

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.

Hi Carly - @lmcfm1 @lilotter @auntiegen @bogibus @helennicola @laureen8844 all have the TD-HDS antibodies and neuropathy and may be able to share some suggestions with you.

Hi John, I do not have the TD-HDS antibodies so I cannot add to discussion. I had previously mentioned the Facebook group which has a following for this.

Hi @helennicola, would you mind sharing the Facebook group again? Thank you!

if you search Facebook Groups it is “TS-HDS & FGFR3 Immune Mediated diseases” I believe. You have to ask to join the group first as with all FB groups.