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

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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My emg was normal however, there were still some nerves "firing while at rest" which is what has stumped my first neurologist. And my new ones. But my new ones have decided to start treating the symptoms that the elevated ts-hds levels.

Still gotta figure out what the emg is about.

Oh and they did the emg in my right thigh. Then open muscle biopsy on my left

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@aharrison0622

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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Hello @janstar61 and @aharrison0622, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. I'm happy to see that you have connected with others who share your symptoms. There is another discussion on IVIG infusions that you both may be interested in reading and learning what experiences other members have shared.

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

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Ketamine is an option I’ve thought about trying we have a clinic where I live my pain never stops and I have tried everything as well and I have a implant tens unit that I never turn off I sleep with it on 50 and Gabapentin at 4500 mg’s a day with cymbatla my pain laughs at all the meds I’m on . No end to the pain and as you said
they look at you like your crazy

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@milesdaviskindofblue

Ketamine is an option I’ve thought about trying we have a clinic where I live my pain never stops and I have tried everything as well and I have a implant tens unit that I never turn off I sleep with it on 50 and Gabapentin at 4500 mg’s a day with cymbatla my pain laughs at all the meds I’m on . No end to the pain and as you said
they look at you like your crazy

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So sorry to hear how much pain you are experiencing. May I ask you how long you have been diagnosed with TS-HDS antibody?

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@amberrose

So sorry to hear how much pain you are experiencing. May I ask you how long you have been diagnosed with TS-HDS antibody?

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Hello @amberrose and welcome to Mayo Clinic Connect. I can see you have read the post by @milesdaviskindofblue and are interested in finding out more about his/her level of pain and duration. I will let the pair of you connect on that.

Can you share if you have also been diagnosed with TS-HDS antibody?

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@amandajro

Hello @amberrose and welcome to Mayo Clinic Connect. I can see you have read the post by @milesdaviskindofblue and are interested in finding out more about his/her level of pain and duration. I will let the pair of you connect on that.

Can you share if you have also been diagnosed with TS-HDS antibody?

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Amanda, yes, I was diagnosed with TS-HDS about four years ago when I began experiencing peripheral neuropathy. My neurologist has not been helpful outside the diagnosis,; consequently, after research on the internet, I found Dr Todd Levine in Scottsdale, AZ who lead the clinical study of IVIG at Beth Israel in Boston on patients with the TS-HDS antibody. After biopsies, it was determined I had SFN. I am not on any medication as I can tolerate the shooting pains and numbness at least at the present time. I am curious as to whether any information is known on the origins of this rouge antibody, average age of onset and how many people have benefited by diet and exercise.
I could not believe I found this Mayo website on the subject I have been pursuing for years! Thanks, Mayo Clinic!

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@lilotter

The Dr. Oaklander referenced in one of your articles has worked with Dr. Khosro Farhad, whom I was fortunate enough to see in New Hampshire. He was the one who diagnosed my SFN as TS-HDS mediated. Some lifestyle changes that have helped me have been giving up gluten and dairy, starting a regimen of low dose naltrexone and pool therapy. The latter is the best kind of exercise for my chronic pain. It's difficult right now with gym closures but I hope to get back this fall. Right now I am swimming in the very cold Maine ocean or my unheated pool. Not quite as therapeutic!

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Hi @lilotter… I have the TS-HDS with SFN as well! I noticed that you are the only one who has mentioned a diet change. Is this a diet for inflammation? Can you explain how it has helped? I am going on
Dr. Amy Myers diet for inflammatory diseases; but in doing so, I am giving up everything I enjoy eating! Are you following any particular diet? Brrrr, to that cold Maine ocean water! Thanks for your information!

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