My daughter just got the diagnosis of TS-HDS this summer. She just started steroid infusions. From what I can understand it appears to be a hoop we have to jump through to have insurance approve IVIG. We are doing infusions every 2 weeks.

Dear Knotter,

Any updates, please? It is my understanding that the clinical trial is suspended indefinitely until after Covid. They notified me of the suspended status in May, and I cannot get any reply from the Harvard research team at this point for updates. We are curious to see how patients are doing who are already receiving actual immunomodulatory treatment. I have read of two case study patients with very positive results, and heard of a handful of others and read one positive and one negative report in this thread. Most, however, give no updates on the progress.

Please let us know if your daughter has improved, declined, stayed the same, only had steroids, had Rituximab, Infliximab, or another monoclonal antibody treatment, had IVIg, etc. !

Knowledge is power but compassion and dedication are the keys.

Gratefully,
Aaron

Hi! Were diagnosed with the same problem (autoimmun small fiber neurophaty with TS-HDS and FGFR3 Autoantibodies ). Is there possibly someone from europe who is receiving ivig treatment? Is it possible to self-finance treatment in Europe? Thanks in advance!

I tested positive for TS-HDS as well.

For some reason the search in this forum shows zero results for "ts-hds"

Try "antibody test" for the search word..