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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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bethunger | @bethunger | Feb 1, 2021
In reply to @laureen8844 "I am sorry one more question. I haven't been conformed with SFN yet and I going..." + (show)
@laureen8844

I am sorry one more question. I haven't been conformed with SFN yet and I going back in tomorrow for another EMG tomorrow. They were unable to get me in for a biopsy until April and because of twitching they want to test again for ALS. Does SFN show up in an EMG at all ? Does anybody else get burning in there legs as well as twitching . What about weakness. ? Thank you so much for all your help. I am just very nervous . John

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I will be sending good thoughts your way. I have RLS along with neuropathy-numbness/pain/weakness but they rotate their assaults on me. Knowledge is always a good thing, so you will gain more of it soon.

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bogibus | @bogibus | Feb 1, 2021
In reply to @laureen8844 "Thank You Megan. Do you get the twitches anywhere else. I am getting them in my..." + (show)
@laureen8844

Thank You Megan. Do you get the twitches anywhere else. I am getting them in my arms and back...not often but they do occur.. John

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My pinkie fingers tend to twitch. Random twitches in other places but very rarely. I hope you get some good news tomorrow, or at least get pointed in a productive direction!

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laureen8844 | @laureen8844 | Feb 2, 2021
In reply to @bogibus "Wow! I hope you are still checking this post. I was recently diagnosed with the abnormal..." + (show)
@bogibus

Wow! I hope you are still checking this post. I was recently diagnosed with the abnormal TS-HDS antibody test result and have realized my neuro was not kidding when he said it was rare. Info is so hard to come by and until now I had not been in contact with anyone else who had this. I would love any information, links, groups etc.
So far I have only tried one round of 1000mg a day for 5 day Solu-Medrol infusions and they made everything worse so now, 2 weeks out, I am still in bed struggling with pain, fatigue, numbness and migraines.
I am really interested in info from anyone who has tried IVIG and/or any other treatments and how they responded
Thanks

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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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John, Volunteer Mentor | @johnbishop | Feb 2, 2021
In reply to @laureen8844 "Can somebody help me please. In the process of educating my Dr. I requested the TS-HDS..." + (show)
@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, One of the best sources I've found for neuropathy information is the Neuropathy Commons website. Here are a couple of pages you might find helpful and one other that I thought had good information.

- Diagnosing Peripheral Neuropathy: https://neuropathycommons.org/neuropathy/tests-diagnosing-small-fiber-polyneuropathy
- Blood Tests To Identify Medical Causes of Neuropathy: https://neuropathycommons.org/get-tested/blood-tests
- Small Fiber Neuropathy Diagnosis and Treatment: https://www.news-medical.net/health/Small-Fiber-Neuropathy-Diagnosis-and-Treatment.aspx

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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bogibus | @bogibus | Feb 2, 2021
In reply to @laureen8844 "Can somebody help me please. In the process of educating my Dr. I requested the TS-HDS..." + (show)
@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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laureen8844 | @laureen8844 | Feb 2, 2021

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

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bogibus | @bogibus | Feb 2, 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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@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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laureen8844 | @laureen8844 | Feb 4, 2021

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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