Paula with Erythromelalgia
4 mins ·
Another person living with EM has forwarded this to me. I ALWAYS SAY DO YOUR OWN RESEARCH! WITH EVERYONE RESEARCHING WE CAN STAY ON TOP OF THINGS AND HELP EACH OTHER OUT!
This means that there are two more AUTOANTIBODIES that might be worth testing TS-HDS and FGFR3. What does all this mean? It could mean that this will be another way to test for small fiber polyneuropathy and if you have a positive punch biopsy for SFPN then IVIG treatment may actually help you. I spoke with Dr. Oaklander at MGH and she is testing me for these antibodies. As it is new, it was not part of her normal blood work that she orders. However, I am not very sure what that means if you have tested negative on your biopsy such as I. It could mean nothing. But,in the future, it could mean something. It is worth turning over every stone !!! Plus remember just because your punch biopsy was negative does NOT mean you do not have SFPN.