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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?

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 4, 2021
In reply to @laureen8844 "Hi Everybody . Can somebody please help me here. I have found all your comments very..." + (show)
@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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laureen8844 | @laureen8844 | Feb 7, 2021

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

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 7, 2021
In reply to @laureen8844 "John. Sorry one last question. Do you experience any weakness with SFN . Thanks" + (show)
@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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laureen8844 | @laureen8844 | Mar 1, 2021

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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laureen8844 | @laureen8844 | Mar 2, 2021

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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2021
In reply to @laureen8844 "My blood test came back for TS-HDS.....showed a reading of 7000 ..does anybody know if that..." + (show)
@laureen8844

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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@laureen8844 - I'm not sure it's a confirmation but I think the high levels are found in patients with small fiber neuropathy. Here's some information from Neuropathy Commons.

"They are common in autoimmune diseases where the immune system ... that some patients with unexplained small fiber neuropathy have high levels of TS-HDS autoantibodies4. ... What Do These SFN-Associated Antibodies Mean?"
-- Autoantibodies and Small-Fiber Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy

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shawn0812 | @shawn0812 | Mar 11, 2021
In reply to @lilotter "I just joined myself and saw your post. I have TS-HDS immune-mediated small fiber neuropathy too,..." + (show)
@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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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.

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1 reply
helennicola | @helennicola | Mar 11, 2021
In reply to @shawn0812 "Hi, I just came across your post and I was wondering if I might be able..." + (show)
@shawn0812

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.

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Hi Shawn, anyone can be in this Facebook group, you just need to ask to join and need a Facebook acct. There are many knowledgeable people on this forum who have a lot of info they share re their experiences and how they cope. I hope you find it helpful. Helen

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1 reply
shawn0812 | @shawn0812 | Mar 11, 2021
In reply to @helennicola "Hi Shawn, anyone can be in this Facebook group, you just need to ask to join..." + (show)
@helennicola

Hi Shawn, anyone can be in this Facebook group, you just need to ask to join and need a Facebook acct. There are many knowledgeable people on this forum who have a lot of info they share re their experiences and how they cope. I hope you find it helpful. Helen

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Thank you, I think I found the fb group and requested to join. Hasn't been accepted yet, though. But I'm looking forward to finally having others that can relate.

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