I know this is not a neurological illness but a dear sweet niece of mine has been told that she probably has this condition.

The specialist she saw said that Sapho Syndrome is very rare, but he couldn't give her much information about it at all.

She's having a bone scan next week which will hopefully confirm or not what's going on with her joints.

I was just wondering if anyone has heard of it, and if they have any information at all. She's done the usual web search and found a little about the condition, but she would also like to hear about personal experiences, if any.

Thank you... just in case.