Dear Kerry,

First I'd like to welcome you to NeuroTalk.

My niece is undergoing investigations right now for this same condition. I posted about it a few days ago, and was lucky enough to get a reply from a new member named Nicc. Maybe Nicc will come back on line to share her experiences with us.

Here's the link in case you haven't seen it yet : http://neurotalk.psychcentral.com/thread55755.html

My niece has it in both feet so far, and she had her bone scan on Friday, but unfortunately will have to wait for 2 weeks to get the results, and therefore find out if she does indeed have Sapho Syndrome.

Here's what she said in her last letter to me:

The technician wasn’t allowed to tell me much only that "he could see the pain in my joints and he was taking extra pics of my problem areas". As he took extra pictures of my feet, knees, hips and arms I think it’s fair to say whatever it is, has invaded more of me than I was hoping. Although if it is this Sapho Syndrome it will most likely come and go from all of my bones and joints.

Please keep in touch Kerry. I'm hoping I may be able to get my niece to join in as well to exchange symptoms and treatment.