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?

Thank you so much

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@laureen8844

Can somebody help me please. In the process of educating my Dr. I requested the TS-HDS antibody test to see if I have SFN . I have the biopsy scheduled for April so I thought it would make sense. My Dr. gave it back to me a bit that it really isn't a proven test for SFN. Any insight into this,,,Thanks

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@laureen8844 sorry for the delay. Just woke up. It is the the definitive test for small fiber polyneuropathy

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Thank You…Really amazed by some of these Dr's . Really pushed back hard

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@lilotter

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!

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@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

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Hi Everybody . Can somebody please help me here. I have found all your comments very reassuring . Thanks to all your comments I am convinced I have SFN. I was scheduled to get another EMG but because of the weather it was cancelled and now I have to get back on a long wait list. I did see my muscular neurologist today and he reluctantly took blood after I pushed him to test for the TS-HDS antibody . He said he is convinced I don't have SFN but doesn't really explain what he thinks I have . My symptoms again are.. I started with sporadic sharp pain in my legs and feet and occasionally forearms. I don't get the sharp pain much anymore but do get cramps in my feet and sometimes my legs. I do get muscle twitching in my legs mostly but also occasionally in my arms and lower back. I have had a twitch in my face a few times as well. I do not have any weakness in any of my limps really at all. I used to be a big drinker as well but do not drink anymore. I was also tested for everything under the sun and all has come back negative. I took my first EMG in November 2020 and it was perfect. I thought it would have shown neuropathy from the drinking but I didn't even have that . My Dr. believes I have benign facilitations. Any thoughts from anybody appreciated. I know I am probably asking similar question I already asked and I do apologize .

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@laureen8844

Hi Everybody . Can somebody please help me here. I have found all your comments very reassuring . Thanks to all your comments I am convinced I have SFN. I was scheduled to get another EMG but because of the weather it was cancelled and now I have to get back on a long wait list. I did see my muscular neurologist today and he reluctantly took blood after I pushed him to test for the TS-HDS antibody . He said he is convinced I don't have SFN but doesn't really explain what he thinks I have . My symptoms again are.. I started with sporadic sharp pain in my legs and feet and occasionally forearms. I don't get the sharp pain much anymore but do get cramps in my feet and sometimes my legs. I do get muscle twitching in my legs mostly but also occasionally in my arms and lower back. I have had a twitch in my face a few times as well. I do not have any weakness in any of my limps really at all. I used to be a big drinker as well but do not drink anymore. I was also tested for everything under the sun and all has come back negative. I took my first EMG in November 2020 and it was perfect. I thought it would have shown neuropathy from the drinking but I didn't even have that . My Dr. believes I have benign facilitations. Any thoughts from anybody appreciated. I know I am probably asking similar question I already asked and I do apologize .

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@laureen8844, You mentioned your doctor thinks you have benign facilitations. Did he give you any reasons why he thinks this? Here are a couple of discussions that you can read through to see if it sounds familiar with your situation.

Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-cramp-fasciculation-syndrome/

Peripheral Neuropathy and benign fasciculation syndrome.: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/

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As always John…Thank You

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John. Sorry one last question. Do you experience any weakness with SFN . Thanks

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@laureen8844

John. Sorry one last question. Do you experience any weakness with SFN . Thanks

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@laureen8844, I don't recall experiencing any weakness associated with small fiber neuropathy. Most of the weakness I've experienced since I was diagnosed with SFN is more related to the aging process and a somewhat sedentary lifestyle before I was diagnosed. I've been more proactive since being diagnosed and I think that has helped with my overall health. I still have some issues with my core strength which I'm working on but have a long way to go 😊

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Guys I received my ts-hds antibody results and it shows a level of 7000. I still haven't received a call from the Dr. Is that level a confirmation of SFN. Thanks

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My blood test came back for TS-HDS…..showed a reading of 7000 ..does anybody know if that is a conformation of SFN.

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