1. < Neuropathy

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

flor2022 | @flor2022 | May 2, 2022
In reply to @pacer3702 "My initial symptom, which started 2 weeks after the first Pfizer vaccine, was muscle spasms in..." + (show)
@pacer3702

My initial symptom, which started 2 weeks after the first Pfizer vaccine, was muscle spasms in my feet. I subsequently developed sensory and motor peripheral neuropathy. I have some fasciculations. Many people in the Neuro V Long-Haulers group on Facebook are reporting fasciculations due to the vaccines. The doctors don't know how to treat us because this is a new phenomenon due to the new Covid vaccine technology. Many patients are reporting like you that their only abnormal test result is TSHDS.

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Hi Pacer, when you say motor peripheral neuropathy--is it limited to Fasciculations? Was it diagnosed as motor peripheral neuropathy by like an EMG?

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1 reply
flor2022 | @flor2022 | May 2, 2022
In reply to @kimberly812 "Hi - I have suffered from neuropathy pain since I was diagnosed with Lyme disease. It..." + (show)
@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

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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!

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pacer3702 | @pacer3702 | May 2, 2022
In reply to @flor2022 "Hi Pacer, when you say motor peripheral neuropathy--is it limited to Fasciculations? Was it diagnosed as..." + (show)
@flor2022

Hi Pacer, when you say motor peripheral neuropathy--is it limited to Fasciculations? Was it diagnosed as motor peripheral neuropathy by like an EMG?

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The motor neuropathy was diagnosed by two EMGs. In addition to the muscle fasciculations, my motor neuropathy symptoms included fatigue, leg weakness, poor balance, ataxia, and loss of vibration sense in my toes. My symptoms are slowly improving.

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jasonarnsberg | @jasonarnsberg | Jun 28, 2022
In reply to @dhamil "Where did you get testing done for the FGFR3 and TS HDS antibodies? Can any lab..." + (show)
@dhamil

Where did you get testing done for the FGFR3 and TS HDS antibodies? Can any lab do it? I requested these tests from my neurologist at Hopkins and he’s never heard of them. Said he didn’t know where to get me tested for it. I’ve been dealing with neuropathy since my first Pfizer vaccine 9 months ago.

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University of washington..st.Louis

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2022
In reply to @jasonarnsberg "University of washington..st.Louis" + (show)
@jasonarnsberg

University of washington..st.Louis

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Hi Jason @jasonarnsberg, Welcome to Connect. Thanks for sharing where you had your testing for the FGFR3 and TS-HDS antibodies. Do you mind sharing the results of the test and any treatments you've found helpful?

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2 replies
jasonarnsberg | @jasonarnsberg | Jun 29, 2022
In reply to @johnbishop "Hi Jason @jasonarnsberg, Welcome to Connect. Thanks for sharing where you had your testing for the..." + (show)
@johnbishop

Hi Jason @jasonarnsberg, Welcome to Connect. Thanks for sharing where you had your testing for the FGFR3 and TS-HDS antibodies. Do you mind sharing the results of the test and any treatments you've found helpful?

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Still wziting for results

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jasonarnsberg | @jasonarnsberg | Jun 29, 2022
In reply to @johnbishop "Hi Jason @jasonarnsberg, Welcome to Connect. Thanks for sharing where you had your testing for the..." + (show)
@johnbishop

Hi Jason @jasonarnsberg, Welcome to Connect. Thanks for sharing where you had your testing for the FGFR3 and TS-HDS antibodies. Do you mind sharing the results of the test and any treatments you've found helpful?

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Has anyone had IVIG treatments

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2022
In reply to @jasonarnsberg "Has anyone had IVIG treatments" + (show)
@jasonarnsberg

Has anyone had IVIG treatments

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There is a discussion on the topic here...

IVIG Infusions - https://connect.mayoclinic.org/discussion/ivig-infusions/

I did see a clinical trial on the treatment - IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3: https://www.centerwatch.com/clinical-trials/listings/212909/ivig-for-small-fiber-neuropathy-with-autoantibodies-ts-hds-and-fgfr3/

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dhamil | @dhamil | Jun 29, 2022
In reply to @jasonarnsberg "University of washington..st.Louis" + (show)
@jasonarnsberg

University of washington..st.Louis

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Thanks you

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lltripp2455 | @lltripp2455 | Jul 29, 2022
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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I would like to join your group. Could you please invite me? Linda Tripp I was diagnosed with TS-HDS small fiber neuropathy several months ago and am trying to find as much about what helps as I can. Thank you

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