TS-HDS Antibody and Small Fiber Neuropathy

i was wondering if anyone with the tshds had been given the steroid kenalog before it developed because this seems to be what caused my neuropathy kenalog is an immunosuppressive drug and capable of causing mgus

@rpenn, I think @cwallen9 has posted about kenalog causing their neuropathy and may have some thoughts.

I had a cervical (neck area) steroid injection using Kenalog, and I immediately started having neuropathy pain in my feet and hands. I now have severe neuropathy pain in my feet, legs, hands, and arms. I have had it for over four years and it slowly gets worse. No doctor will address the Kenalog as the cause, but I believe the doctor injected the Kenalog into my spinal canal by mistake. Kenalog is supposed to be toxic to nerves. They use Kenalog because, when done correctly, works better than other steroids. However, if done incorrectly, it can cause severe damage to the spinal chord.

Did you also test positive for rheumatoid factor

Hi,

I am suffering from painful SFN post Covid and my test results were very high for anti-TSHDS-IgM antibodies (50.8). My doctors won't prescribe IVIG or plasma exchange and are just treating it with giving me gabapentin. Where are you getting care? Could you recommend a doctor/hospital to go to that will be open to IVIG?

I would be interested as my long covid symptoms started 2 month after the booster.

@pfkrieger, you'll notice that we removed your email address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

Here is a link to the NIH announcement for the study with more information:
-- NIH launches trial to study allergic reactions to COVID-19 mRNA vaccine:
https://www.nih.gov/news-events/news-releases/nih-launches-trial-study-allergic-reactions-covid-19-mrna-vaccine

I’ve been diagnosed with SFN. I was completely healthy but after taking my second COVID vaccine my symptoms started that night. I deal with burning neuropathy, pain, vision problems and muscle tightness. I am positive for TS HDS (15,000) and want to know if anyone has had success with IVIG? I’m also curious if this is a progressive condition or if people stay pretty stable?

Hi @lonestarmom1, Welcome to Connect. That's a good question. I do think neuropathy is a progressive condition but the real question is what does that mean in time. I don't think anyone can answer that but that's just my non medical opinion. I was also told my small fiber PN was progressive and since I don't have any pain with it, just numbness, I was told just watch it and let us know if it gets worse. So the bottom line is it really helps to be your own advocate and learn as much as you can about your condition and what treatments help provide quality of life.

Here are a couple of other discussions you might find helpful:
--- Neuropathy post-Covid infection: Is there treatment that helps?
https://connect.mayoclinic.org/discussion/neuropathy-in-feet-post-covid/
--- IVIG Infusions:
https://connect.mayoclinic.org/discussion/ivig-infusions/.
Have you started or tried any treatments for the neuropathy symptoms?

Thank you! I’ll take a look at the links you posted. My doctor prescribed Lyrica but I haven’t taken it yet.