← Return to TS-HDS Antibody and Small Fiber Neuropathy

Discussion

TS-HDS Antibody and Small Fiber Neuropathy

Neuropathy | Last Active: Nov 13, 2023 | Replies (156)
Comment receiving replies
@kimberly812

Hi - I have suffered from neuropathy pain since I was diagnosed with Lyme disease. It took two years to be diagnosed with it back in 2006 so I actually had symptoms since 2004. Just last summer I had the biopsy done and the antibody test TS-HDS and my level was 28,000. The pain has been about 8 for the past two years and now has started in my left calf and foot as well. I have tried all the medications and can’t tolerate a high enough dose to help. My Neuromuscular doctor has suggested a trial of Prednisone for 8 weeks. Has anyone tried this? I also just purchased a Quell machine but have yet to use it.
My sleep suffers and I have chronic tiredness (not sleepy) just drained and fatigued all the time. I have requested to join the FB group but haven’t been approved yet. I am thrilled I found this discussion since dealing with this for 18 years has been a nightmare and totally altered my life.
Kimberly812

Jump to this post

Replies to "Hi - I have suffered from neuropathy pain since I was diagnosed with Lyme disease. It..."
John, Volunteer Mentor | @johnbishop | Mar 4, 2022

Welcome @kimberly812, I saw this recent Dec 2021 article that might offer some help with those members dealing with the TD-HDS and FGFR3 antibody and neuropathy.

Science News: Clinical Features and Treatment Response in Immune-Mediated Small Fiber Neuropathy with Trisulfated Heparin Disaccharide or Fibroblast Growth Factor Receptor 3 Antibodies -- https://www.aanem.org/News-Express/Education/Science-News-Clinical-Features-and-Treatment-Respo

Since you also mentioned you have Lyme disease I thought you may also be interested in these discussions:
-- Lyme disease and neuropathy: https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/
-- Lyme Disease: https://connect.mayoclinic.org/discussion/lyme-disease-1/

Have you tried any lifestyle or diet type changes to see if they may help your symptoms?

VIEW AND REPLY
flor2022 | @flor2022 | May 2, 2022

Hi Kimberly, may I ask why a neuromuscular neurologist is the type you see? Do you have a lot of muscle issues? I sure do, feels reassuring to see someone with so many years' experience (while I can only sympathize) because I have concerns for like ALS/muscular disease. Thanks for your sharing!

VIEW AND REPLY