TS-HDS Antibody and Small Fiber Neuropathy

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

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

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?

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!

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!

Hi , I have had burning and pin and needle in feet and hands for eight month and has been diagnosed with TS HDS and SFN. It is more than two month that I have got diziness and mainly feeling of imbalance and blurry vision. I have done MRI and seen several ENT doctors but they have not found the reason. I want to know if any body with TS HDS has got dizziness and balance problems? Thank you very much.

Hello @nastaranh2000, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I did a quick search of discussions on Connect and found that @bogibus mentioned TS-HDS and dizziness in another discussion so may be able to share their experiences with you.

Have you discussed the dizziness, balance and blurry vision symptoms with your doctor? Are you on any medications for your SFN?

I also have balance issues and dizziness. I was diagnosed with immune mediated SFN and TS-HDS antibodies in 2018. I’ve developed dysautonomia as well. I’m seeing Dr’s at Mayo-Rochester for the first time this coming Aug. I hope to get more answers as to what is causing this. I was taking Lyrica for over a year and it seemed to help with the symptoms of pain but caused the dizziness to intensify. Good luck and please let us know how you’re doing

Thank you very much for your response. How long you have had the dizziness and balance issue? I also stopped Gabapentine sonce it made me more imbalance. They are going to give me IvIg. Is this helpful? Have you been treated with this? Thank you.

Thank you. Yes but he said he is not sure that it is related to TS HDS. They are going to give me IvIg this week. I do not know how much effective is that.