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?

@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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@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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@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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@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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I hear you, it’s great to be able to share and know you’re not alone with this horrible disease. Helen

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Hello @shawn0812 and welcome to Mayo Clinic Connect. What a relief it must be to find others who understand TS-HDS. I am glad you were able to find the Facebook group mentioned and look forward to having you here as well.

Have you considered seeking care outside of where you are currently?

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@shawn0812 Hello, Shawn. Welcome to Mayo Connect! Have you ever lucked up, my friend. This is a group of folks who truly know what you're talking about, many have been and/or are where you are in this health journey. It can be really rough to deal with these things alone, especially if you've been down the road trying to find docs or anyone who understands what you're feeling. So, enjoy meeting these good people and learning a lot about your SFN.

Stay safe, blessings and welcome. elizabeth

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Hi,

I have Small Fiber Neuropathy With Autoantibodies TS-HDS and my autoimmune doctor is recommending IVIG. Since IVIG is not FDA approved to treat this I am having trouble with insurance. Does anyone know of any clinical trials? I found one at Beth Israel that has been suspended but no other active trials.

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@elki0475

Hi,

I have Small Fiber Neuropathy With Autoantibodies TS-HDS and my autoimmune doctor is recommending IVIG. Since IVIG is not FDA approved to treat this I am having trouble with insurance. Does anyone know of any clinical trials? I found one at Beth Israel that has been suspended but no other active trials.

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Hello @elki0475 – Welcome to Mayo Clinic Connect. I was not able to find an active IVIG clinical trial for small fiber neuropathy with TS-HDS either. I did see one at Loyola University that had a start date of Jan 2022 with 20 participants but it was suspended also – https://www.smartpatients.com/trials/NCT04153422 It could all just be due to COVID.

Have you thought about other alternatives? There is another discussion where members have shared their experience and what helps them you might find helpful.
– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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I have tried everything. Naltrexone, Tramadol, Cymbalta, Lyrica, physical therapy, massage, thousands and thousands of dollars on medical mj, naturopathic medicine, thousands of dollars on chinese herbs, thousands of dollars on acupuncture, physical therapy… you name it I have tried it. The only thing that has relieved the pain and sensations -burning crushing pain, is a combination of Lyrica and opioids. I have remained stable on my meds for several years. They have brought my pain levels down from a 9 to a 3. I am at a point I am will to try almost anything now to try to reduce the meds I am on. I am tired of doctors looking at me like I am a drug addict because I am on an opioid patch. I have been looking into IVIG as a possible option.

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@lmcfm1

Thank you for the information which was helpful. I was hoping some members who have this same anti body might respond too. There seems like there is not much information out there regarding this particular anti-body and personal stories of whether IVIG helped, and how many treatments they had, etc, I’m scheduled soon so will be able to provide feedback.

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I have this same thing. And I've been in diagnostic testing since 2018. Mid 2019 showed the elevated levels. And then muscle biopsy done early 2020 showed nothing as expected. I was referred to another neurology clinic for a 2nd opinion. Which I've seen them since early March this year and they are admitting into the hospital for a 5 day stay to receive ivig therapy to help with my symptoms. And I'm so nervous. As you said, there's not much known yet about this. And for me in particular. They've already long ruled out just about every single other diagnosis it could be/that causes sfn. I hope theres more to read in these comments! And I'll share my experience as i go through it!

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@laureen8844

How do they test for TS-HDS antibody …is that a blood test

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Yes

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