Hey Desi,

Really sorry to hear about the spread of RSD - has your PCP confirmed it? are you still having problems from your legs? Have they suggested anything for it? I'm glad the fentanyl is helping you...

As you know I have full body RSD - spread from right wrist to right leg then left arm, left leg, hips, pelvis, spine, neck, face and mouth and now internally stuff. Such, Such fun! oh well. Saw my neuro yesterday who said my only hope is if I have the DBS as otherwise I will just contiue getting worse. He was asking me if it's worth me contiuning with meds as don't appear to make much difference - but I'm not willing to come off them! I remember life without them, especially the ketamine!!! yes, I'm in pain now but if we're late with a dose or the UK stop making it for a couple of months then I REALLY feel it! Oh well, but he botoxed my neck and left arm and told me to pray hard that it helps my left arm.

Have you been able to look at whether Bill can use a HBOT centre? you might be able to as well. Really hope he is doing better soon, and you of course my dear.

~Tons and tons of love to you Desi, and to Bill...

Love ya

Rosie xxxxxx