i have sapho syndrome advice needed please
 

hi im 22 and was diagnosed with sapho syndrome at 14 i have the condition all over my body many people get the condition in there collar bone and knees but im quite a rare little thing and have it on 70% off my body. ive got it in my jaw bone also my jaw locks occasionally and i cant open my mouth very wide. also ive had to have teeth removed as they were inflamed and im positive its all to do with sapho syndrome. i have had all treatment available and it has yet to work on me. i just take strong painkillers every day including cocodamol 30/500 tramadol diazepam naproxen. in the winter the pain gets worse and i feel so miserable i cant get out of bed. im worried how this will affect me as i get older. if there is anyone who has this condition i would be interestead to no how it affects there life. i also have polycistic ovaries,hidradenitis suppurativa,irritable bowel syndrome,blepheritis,ive had 2 mini strokes in the past and have had depression. has anyone else got these things and sapho syndrome. id be greatfull for a reply thankyou kerry x

hello kerry .... ... so glad you have found NT .. there are lots of helpful people here ... i suffer with adhd, reflux disorder, bipolar depression, and high blood pressure ... just to name a few ... surf some of the other threads too ... there are lots of friendly and helpful people here ... again welcome kerry to NT

Dear Kerry,

First I'd like to welcome you to NeuroTalk. :hug:

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.