I AM AN RSD SURVIVOR AND SINCE IVE BEEN DIAGNOSED 6 YEARS AGO IVE HAD NOTHING BUT SET BACKS, SHINGLES (3TIMES) PANCREATITIS (2 TIMES) PITUITARY TUMOR, MOST IMPORTANTLY IVE LOST MY LIFE I CANT STAND FOR MORE THAN 30 SECONDS, I SWEAT SO BAD THAT I HAVE TO BE IN A CONTROLLED ENVIRONMENT, AND OH YEAH MY FAMILY COULDNT BARE WATCHING THERE ONCE SUCCESSFUL, WITTY, FULL OF DREAMS AND POSITIVITY FAMILY MEMBER GO THRU THIS, THAT THEY LEFT. THATS JUST ONE OF MANY THOUSANDS OF HORRENDOUS STORIES, AND DONT GET ME STARTED ON THE DR'S AND NURSES , GRANTED ALL ARENT BAD, BUT, WHEN THERE ISNT ANY EDUCATION BEING TAUGHT THEY TEND TO TREAT YOU LIKE A DRUG ADDICT AND IN MY CASE GOT MENTALLY AND EMOTIONALLY ABUSIVE. WERE TAUGHT TO BE OUR OWN ADVOCATES, BUT WHEN WE ARE WE HAVE THE TITLE DIFFICULT, AND VICE VERSA . I DONT LIKE SPEAKING FOR OTHERS, BUT FOR MYSELF I HAVE TRIED EVERYTHING ACCESSIBLE TO ME EVERYTHING INCLUDING A 30 DAY PT,OT EXTENSIVE THERAPY SESSIONS AT THE CLEVELAND CLINIC. I HAVE RESEARCHED EVERYTHING SINCE I WAS DIAGNOSED , I MEAN I GOT THIS FROM KNEE SURGERY AFTER ASKING DR'S FOR HELP BECAUSE I KNEW SOMETHING WAS WRONG, AND THERE IS SOMETHING WRONG. PEOPLE GETTING THIS DISEASE BECAUSE OF A HEART ATTACK, SURGERY, A HEARD A BEE STING ONCE, AND THERE ARE SO MANY OUT THERE WHO ARE BEING MISDIAGNOSED, SO THAT SHOULD MAKE YOUR DECISION EASIER. SO MANY MORE CASES ARE GOING TO APPEAR AND SO MUCH AWARENESS IS STARTING TO HAPPEN, AND WILL CONTINUE ESPECIALLY WITH CHARLES MATTOCKS DOCUMENTARY COMING OUT, SO WOULDNT YOU RATHER BE ON OUR SIDE, I KNOW I WOULD. WE NEED THIS CURE AND I FEEL THE ITALIANS HAVE GIVEN ENOUGH PROOF THROUGH THEIR RESEARCH AND SHOWN BY THE AMOUNT OF PATIENTS THEY HAVE CURED. ITS ALL IN THE NUMBERS IN ITALY TREATMENT USING NERIDRONATE HAS PASSED ITS EXPERIMENTATION PHASE BY OVER FOUR YEARS NOW ,AND HAS BEEN THE OFFICIAL THERAPY APPROVED BY THE NATIONAL HEALTH SYSTEM FOR THE CURE OF RSD/CRPS. IN AMERICA ONLY TRIALS ARE BEING DONE WITH PROTOCOLS AND DOSAGES OF THE PHARMACEUTICAL THAT ARE DIFFERENT FROM THE ONES USED IN ITALY. ITS IMPORTANT TO KNOW THAT, IF YOU TAKE PART IN A TRIAL, THERE IS A HIGH PROBABILITY (MORE THAN 50%) TO NOT BE TREATED WITH NERIDRONATE, BUT WITH A PLACEBO. THE RISK FOR A PATIENT, IN THIS CASE, ISNT JUST THE FACT THAT THEY WERE DECEIVED INTO THINKING THEY WERE TREATED, BUT EVEN TO WASTE THEIR TIME WHEN THEY ACTUALLY COULD BE GETTING THE TREATMENT THEY NEED. OVER ALL WE NEED THE FDA TO ALLOW THE 100mg. OF NERIDRONATE TO BE ADMINISTERED 4 TIMES OVER FOUR CONSECUTIVE DAYS, IF AND WHEN THIS IS PASSED IT TAKES 60 DAYS TO REACH ITS FULL EFFECT. WE WANT THIS CURE AND WONT STOP UNTIL WE GET IT HERE IN THE STATES, OUR DISEASE IS CALLED THE SUICIDE DISEASE I HATE SAYING THAT EVERY TIME, BUT YOU NEED TO HEAR THAT, AND OUR PAIN IS SAID TO BE OFF THE McGuillis PAIN SCALE, WORSE THAN CANCER,CHILD BIRTH, AND AMPUTATION. MY QUESTION TO YOU IS NOW THAT YOUR TAKING OUR PAIN MEDICATION AWAY THAT KEEPS US FROM GOING CRAZY, IM ON THE MINIMAL,BUT I CHOOSE TO BE, UT ITS STILL CONSIDERED A LOT TO A NORMAL PERSON AND IM ALWAYS AN 8, I CANT DO ANYTHING BUT ACCEPT THAT,BECAUSE THERE ISNT ANYTHING OUT THERE THAT WILL HELP,,,,,BUT THIS . SO WHATS GOING TO HAPPEN WHEN YOU TAKE THE PAIN MEDICATION AWAY LIKE I STATED BEFORE I DONT WANT TO BE KNOWN AS THE SUICIDE DISEASE, BUT YOU DONT READ ALL THE SUPPORT GROUPS CONCERNS AND MISERY THEY FEEL. PLEASE PLEASE PLEASE DO SOMETHING ABOUT THIS, BEFORE WE LOSE MORE LIVES, WHEN WE DONT HAVE TO IN THE FIRST PLACE., THANK YOU FOR YOUR TIME, MEREDITH BARSON
