Not having answers is SO frustrating! I believe many members of this forum have had similar experiences. I know I have. Partly - it's because you have no idea how to treat the symptoms - and partly just because we want to know what we are dealing with. Can it be cured? Will it get worse? I know one of the first questions I asked was whether my mobility would be impacted over the long term. I was told my mobility would not be impacted - but honestly, I am not sure I believe that...

Fingers crossed that you get some answers in February!