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.

helennicola | @helennicola | Jul 9, 2021
In reply to @carlyschneider "Thank you so much!" + (show)
@carlyschneider

Thank you so much!

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you’re welcome!

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nastaranh2000 | @nastaranh2000 | Aug 23, 2021
In reply to @lbo615 "I’ve had the balance issues for a number of years. I haven’t been treated with IvIg..." + (show)
@lbo615

I’ve had the balance issues for a number of years. I haven’t been treated with IvIg yet. The Dr’s where I live haven’t wanted to do that through the years. They said it can cause bad side effects. That’s one reason I finally decided to take the trip to Mayo and hopefully get some answers and a treatment plan.

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Hi Ibo615, Thank you for your response. I am a 40 year old female. I have had burning and pain in feet for 9 month and have had a feeling of unsteadiness in the last four month. I do not have spinning vertigo, but I feel unsteady all the time. Just want to know if you have similar symptom? I have had six dose of IvIg in last two month. I feel a little bit better after IvIg, but not very dramatically. Also Just was curious if you visited the Mayo and what they have told you. I would be thankful if you respond.

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1 reply
nastaranh2000 | @nastaranh2000 | Aug 23, 2021
In reply to @lmcfm1 "Thank you for the information which was helpful. I was hoping some members who have this..." + (show)
@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 had 5 dose IvIg in July for TsHDS and another two dose this month. I was struggling with two much headaches after that. If I compare before and after IVIG, I have been very slightly better, I do not know yet if it will work. I have had burnning in feet and diziness and balance issues, I feel kind of unsteady all the time, I am very interested to know if you have taken IvIg and what are your symptoms and did that help? Thanks.

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lbo615 | @lbo615 | Aug 23, 2021
In reply to @nastaranh2000 "Hi Ibo615, Thank you for your response. I am a 40 year old female. I have..." + (show)
@nastaranh2000

Hi Ibo615, Thank you for your response. I am a 40 year old female. I have had burning and pain in feet for 9 month and have had a feeling of unsteadiness in the last four month. I do not have spinning vertigo, but I feel unsteady all the time. Just want to know if you have similar symptom? I have had six dose of IvIg in last two month. I feel a little bit better after IvIg, but not very dramatically. Also Just was curious if you visited the Mayo and what they have told you. I would be thankful if you respond.

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Yes, I do have the unsteadiness and balance issues. I’m on my way to Mayo as I type this. Tomorrow I start my appointments & tests. I will post again after Friday.

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2 replies
nastaranh2000 | @nastaranh2000 | Aug 23, 2021
In reply to @lbo615 "Yes, I do have the unsteadiness and balance issues. I’m on my way to Mayo as..." + (show)
@lbo615

Yes, I do have the unsteadiness and balance issues. I’m on my way to Mayo as I type this. Tomorrow I start my appointments & tests. I will post again after Friday.

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Thank you very much for responding. I am very interested to see what tests they will. Thank you.

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nastaranh2000 | @nastaranh2000 | Oct 11, 2021
In reply to @lbo615 "Yes, I do have the unsteadiness and balance issues. I’m on my way to Mayo as..." + (show)
@lbo615

Yes, I do have the unsteadiness and balance issues. I’m on my way to Mayo as I type this. Tomorrow I start my appointments & tests. I will post again after Friday.

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Hello, I was currious to know what was the result of your visit to Mayo. Thanks.

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lassen | @lassen | Nov 7, 2021
In reply to @lmcfm1 "Thank you for the information which was helpful. I was hoping some members who have this..." + (show)
@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 also have high TS-HDS antibodies and small fiber neuropathy. I was treated with Solumedrol infusions and my level came down. It is back up again after close to two years. I have moderate to severe pain. I have tried various treatments for pain but they tend to become ineffective over time. I would be interested in finding out more about people with similar issues and how they are addressing the diagnosis. How do I join the Facebook group mentioned in an earlier post?

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 8, 2021
In reply to @lassen "I also have high TS-HDS antibodies and small fiber neuropathy. I was treated with Solumedrol infusions..." + (show)
@lassen

I also have high TS-HDS antibodies and small fiber neuropathy. I was treated with Solumedrol infusions and my level came down. It is back up again after close to two years. I have moderate to severe pain. I have tried various treatments for pain but they tend to become ineffective over time. I would be interested in finding out more about people with similar issues and how they are addressing the diagnosis. How do I join the Facebook group mentioned in an earlier post?

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Hello @lassen, Welcome to Connect. I'm sorry to hear that your treatment with Solu Medrol (Methylprednisolone sodium succinate) infusions is no longer helping with your severe pain. To join a private Facebook group you need to click the Join button on their FB page and follow any rules the group has. I think from a previous post you are referring to the following FB group.

TS-HDS and FGFR3 Immune Mediated Small Fiber Neuropathy:
-- https://www.facebook.com/groups/735210727192623

As with joining any private group you should also follow up and do your own research on any information that is presented. A good place to start with that is PubMed - https://pubmed.ncbi.nlm.nih.gov/ and other trusted sources for medical information like teaching hospitals and major health facilities like Mayo Clinic.

Have you tried any lifestyle changes or complementary & integrative therapies to see if they have any effect on your symptoms?

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ncameron | @ncameron | Nov 9, 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 too have this antibody and would be thankful if I could join this facebook group. Thank you

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 9, 2021
In reply to @ncameron "Hi, I too have this antibody and would be thankful if I could join this facebook..." + (show)
@ncameron

Hi, I too have this antibody and would be thankful if I could join this facebook group. Thank you

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See my post directly above the post you made - here's the link which includes a link to the Facebook group:
https://connect.mayoclinic.org/comment/652245/

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