TS-HDS Antibody and Small Fiber Neuropathy

I hear you, it’s great to be able to share and know you’re not alone with this horrible disease. Helen

Hello @shawn0812 and welcome to Mayo Clinic Connect. What a relief it must be to find others who understand TS-HDS. I am glad you were able to find the Facebook group mentioned and look forward to having you here as well.

Have you considered seeking care outside of where you are currently?

@shawn0812 Hello, Shawn. Welcome to Mayo Connect! Have you ever lucked up, my friend. This is a group of folks who truly know what you're talking about, many have been and/or are where you are in this health journey. It can be really rough to deal with these things alone, especially if you've been down the road trying to find docs or anyone who understands what you're feeling. So, enjoy meeting these good people and learning a lot about your SFN.

Stay safe, blessings and welcome. elizabeth

Hi,

I have Small Fiber Neuropathy With Autoantibodies TS-HDS and my autoimmune doctor is recommending IVIG. Since IVIG is not FDA approved to treat this I am having trouble with insurance. Does anyone know of any clinical trials? I found one at Beth Israel that has been suspended but no other active trials.

Hello @elki0475 - Welcome to Mayo Clinic Connect. I was not able to find an active IVIG clinical trial for small fiber neuropathy with TS-HDS either. I did see one at Loyola University that had a start date of Jan 2022 with 20 participants but it was suspended also - https://www.smartpatients.com/trials/NCT04153422 It could all just be due to COVID.

Have you thought about other alternatives? There is another discussion where members have shared their experience and what helps them you might find helpful.
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I have tried everything. Naltrexone, Tramadol, Cymbalta, Lyrica, physical therapy, massage, thousands and thousands of dollars on medical mj, naturopathic medicine, thousands of dollars on chinese herbs, thousands of dollars on acupuncture, physical therapy... you name it I have tried it. The only thing that has relieved the pain and sensations -burning crushing pain, is a combination of Lyrica and opioids. I have remained stable on my meds for several years. They have brought my pain levels down from a 9 to a 3. I am at a point I am will to try almost anything now to try to reduce the meds I am on. I am tired of doctors looking at me like I am a drug addict because I am on an opioid patch. I have been looking into IVIG as a possible option.

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!

Yes

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

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/