HI, I FEEL FOR Y0U, I HAVE GONE THROUGH THE VERY SAME THING. I HAVE RSD WITH DYSTONIA IN MY RIGHT FOOT AND LEG. I LIVE IN SC, AND THE LACK OF EDUCATION ABOUT BOTH OF THE DISEASES IS ALARMING. I WAS FINALLY DIAGNOSED, THE RSD IS MAINLY TREATED WITH SYPATHETIC NERVE BLOCKS ONCE A MONTH FOR 6 MONTHS, PHYSICAL THERAPY AND MEDS. ALSO TO FIND OUT FOR SURE THE TYPE AND IF YOU HAVE ANY DYSTONIA INVOLVED I WOULD ADVISE YOU TO CALL THE NATIONAL INSTITUTE OF HEALTH. THEY HAVE STUDYS AND PROGRAMS YOU CAN GET INTO. THERE IS ONE OPEN RIGHT NOW CALL THEM , THIS ONE IS TO DIAGANOS WHAT YOU HAVE AND TO FOLLOW AND TO BE A CONSALTANT FOR YOUR REG. DR. THE PROTOCOL NUMBER TO ASK FOR IS 93-N-0202. GO TO THE NIH SITE AND GET THE PHONE NUMBER. THEY WILL PAY YOUR A IR FARE. HOTEL AND FOR ALL YOUR TEST. I HAD TREMORS SO BAD, AND THE DR HERE HAD NO CLUE WHAT TO DO, SO MY DR FROM NIH CALLED AND TOLD THEM WHAT TO PUT ME ON AND IT HAS HELPED A LOT. I GO TO EMORY IN ATLANTA FOR THE DYSTONIA, AND GO TO GREENVILLE FOR THE RSD, AND GO TO THE NIH, WHEN EVER THEY HAVE A TREATMENT AVAILBLE TO SUITE MY CONDITION. CALL THEM AND GET IN, IT CAN CHANGE YOUR LIFE, IT CHANGED MINE. UP TILL THEM , MY STORY WAS THE SAME AS YOURS. GOOD LUCK, LET ME KNOW IF YOU NEED FURTHER ASSISTANCE I CAN CALL MY DR THERE. YOU CAN EMAIL ME @
[email protected] YOU ARE THE FIRST PERSON I HAVE MET THAT HAS IT IN THE FOOT AND LEG LIKE ME, TO ME THATS THE WORST PLACE TO HAVE IT. THE DYSTONIA IS STARTING TO TURN MY FOOT AND IF THIS MED DOSNT WORK THEN THEY ARE GOING TO TRY BOTOX SHOTS. THE PAIN HAS GOTTEN TO THE POINT THAT I AM NOW SERIOUSLY CONSIDERING A SPINAL CORD STIMULATOR, I DIDNT THINK I WOULD EVER GO THERE, BUT.PLEASE EMAIL ME AND LET ME KNOW IF YOU HAVE ANY LUCK REACHING THE NIH OR IF YOU NEED HELP, OR IF YOU JUST WANT TO TALK TO SOMEONE WHO KNOWS WHAT YOU ARE GOING THROUH. MY NAME IS AURA, I HOPE THIS WILL HELP YOU, GOOD LUCK