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To all members who have cared: THANK YOU FOR RESPONDING TO MY POSTING.(SEE MEDICINE BELOW) I AM SHOCKED. JUST HUNG UP WITH OUR NEURO TO ASK HIM FOR AN APPOINTMENT TO DISCUSS SOME SERIOUS ISSUES RE-MY WIFE. HIS RESPONSE WAS “CAN’T DO THAT, HAVE NO OPENINGS TILL MARCH OR APRIL. TRY TO DO IT ON THE PHONE, HE SAID. I ASKED HIM AGAIN AND HE SUGGESTED FOR US TO DO IT ON THE PHONE. I GAVE HIM AN SHORT OVERVIEW WHILE HE LOOKS HER RECORDS, AND I HEAR HIM SAY” MAYBE WE SHOULD CUT THE EFFEXOR WHICH MIGHT BE CAUSING IT. THEN HE SUGGESTS MAYBE WE SHOULD CUT ALL MED’S IN HALF. AT THIS POINT I ASK HIM “ARE WE TREATING HER FOR PD?” HE REPLIES “ SOMETHING LIKE THAT POSSIBLY OR SOME TYPE OF DYSTONIA”. WHY DO WE STILL HAVE HER ON VICODIN, HE REPLY’S “SHE CLAIMS TO HAVE PAIN AND THAT WOULD NOT BE CAUSING THE PROBLEM YOU ARE EXPERIENCING.” DO YOU THINK SHE WOULD CONSIDER SEEING A PSYCHIATRIST HE ASKS. I SAID I DO NOT KNOW. HE THEN SUGGESTED THAT HIS OFFICE WILL CALL ME RE- NEW APPOINTMENT FOR HER IN ABOUT 10 DAYS. I KNOW WHAT YOU ARE GOING TO SAY. WHY DON’T YOU LEAVE THIS NEURO. MY WIFE THINKS THE WORLD OF HIM (HE HAS EXCELLENT BEDSIDE MANNERS) WHICH SHE LIKES IN A DOCTOR SO I HAVE NOT BEEN ABLE TO EVEN SUGGEST ANOTHER DOCTOR . PLUS SHE DOES NOT SEE ANY THING WRONG WITH HER TREATMENT. FOR THE BENEFIT OF THOSE WHO HAVE TRIED TO ASSIST ME WITH MY WIFE’S ILLNESS (PD)?I WOULD LIKE TO GIVE YOU AN OVERVIEW OF THE HISTORY SO THAT IT MAY BE BETTER UNDERSTOOD IN THE FUTURE. MY WIFE TOOK ILL IN 1988, STARTING WITH WEAKNESS, UNABLE TO STAND IN LINES , CARRYING GROCERIES, ALWAYS TIRED ETC. AFTER 1.5 YEARS IT WAS DETERMINED THAT SHE MIGHT HAVE MG (MYASTHENIA GRAVIS) DURING THE NEXT 3.5 YEARS, WHILE THE DISEASE COULD NOT BE CONFIRMED THROUGH LAB TEST INCLUDING A MUSCLE BIOPSY, 8 SPECIALISTS AND 3 HOSPITALIZATION IT WAS CONCLUDED THAT SHE HAS MG. TREATING HER FOR MG MADE HER ONLY WORSE. SINCE NONE OF THE TREATMENT SHOWED ANY IMPROVEMENTS, IN FACT, SHE WAS GOING DOWNHILL SO FAST THAT SHE COULD ONLY SIT UP FOR AN HOUR, THE REMAINDER OF THE DAY SHE WAS LAYING ON THE COUCH OR BED. SHE WAS ALWAYS IN A WHEELCHAIR WHEN WE TOOK HER OUT AND COULD ONLY SIT IN THE WHEELCHAIR FOR AN HOUR. PREDNISON MEDICATION WAS THE ONLY MED. THAT GAVE HER SOME STRENGHT, BUT VERY LIMITED. SHE HAD ALL THE OTHER SIDE EFFECTS FROM THE PREDNISON. IT WAS NOW RECOMMENDED THAT SHE HAS A THYMECTOMY (THYMUS REMOVED) SINCE SHE WAS NOT HELPED BY ANY OF THE OTHER TREATMENT. AFTER CONFERRING WITH OUR REGULAR DOCTOR AND BY THIS TIME SHE WAS UNABLE TO WALK , READ, TALK OVER 10 MINUTES, CHEW ETC. OR ACCOMPLISH ANY MINOR CHOIR. IT SEEMED THAT SHE RAN THE BATTERY DOWN AND COULD NOT RECHARGE IT AGAIN UNLESS SHE WOULD LAY ABSOLUTELY STILL FOR AT LEAST 2 HOURS BEFORE SHE COULD STAND AGAIN. SHE HAD THE SURGERY. PLEASE BE ADVISED THAT WE HAVE ALWAYS HAD THE GOOD FORTUNE OF DEALING WITH THE TOP HEALTHCARE FACILITIES AND DOCTORS WHO SPECIALIZE IN THE DIAGNOSED DISEASE. (WAS THAT MISTAKE??) APPROXIMATELY A YEAR AFTER THE SURGERY HER DOCTOR WHO SPECIALIZED IN MG SUGGESTED THAT HE NO LONGER COULD DO ANY THING FOR HER . I FOUND A NEURO WHO CAME SO HIGHLY RECOMMENDED AND THE FACT THAT HE HAD WORKED MIRACLES WITH SOME PATIENTS. AFTER STUDYING HER CASE FOR A SHORT MOMENT HE SAID “I HAVE TO GET YOU OFF ALL MEDICATION AND START FROM SCRATCH.” MY WIFE REPLIED THAT SHE NEEDS THE MEDICATION TO LIVE, PARTICULARLY THE PREDNISON. HE WAS UNABLE TO TALK HER INTO WEANING HER OFF THE MED’S SO HE MADE THE PROPER DECISION OF PUTTING HER IN THE HOSPITAL AND WITHDREW ALL MEDICATION. SHE WOKE UP THE NEXT DAY WITHOUT ANY MAJOR PROBLEMS. HE PUT HER BACK ON A TRANQUILIZER AND OF COURSE VICODIN DUE TO HER COMPLAINING OF PAIN. AFTER 3-4 MONTHS HE SUGGESTED THAT SHE MIGHT HAVE PARKINSON. HE PUT HER ON CINAMET WHICH SHE CLAIMS SHE COULD NOT TAKE. NOTE: MY WIFE HAS ALWAYS BEEN SO SENSITIVE TO MEDICATION THAT OVER THE YEARS WE ALWAYS HAD TO DIVIDE HER PRESCRIPTION BY 50%. DOCTORS IN THE PAST HAVE ASKED HER HOW CAN SUCH A SMALL DOSE GIVE HER THE SIDE EFFECTS. WHEN SHE TRIES A NEW DRUG AND IF SHE HAS A BAD DAY SHE OF COURSE WILL BLAME THE BAD DAY ON THE NEW DRUG. SHE WILL NOT ALLOW THE BODY TO ACCLIMATE FOR A FEW DAYS TO THE NEW DRUG, WHICH OF COURSE HAS GIVEN THE DOCTORS A HEADACHE. SO THE STORY GOES ON: DOCTOR SAYS HOW ARE YOU TODAY. WIFE-I AM VERY DEPRESSED. DOCTOR- HM HM WE HAVE TRIED YOU ON ALL ANTI DEPRESSANT AND YOU CLAIM TO HAVE SIDE EFFECTS FROM ALL. WIFE- YES DOCTOR. DOCTOR - WELL LET US TRY EFFEXOR THAT IS THE ONLY ONE YOU HAVE NOT TRIED. NEXT VISIT ANOTHER SYMPTOM AND SOME OTHER MEDICATION IN CONJUNCTION. SHE NEVER SEEMS TO GET OFF THE MEDICATION, ONCE SHE IS ON THEM. NOW FOR THE QUESTION -DOES SHE REALLY HAVE PD????? AS OF THE PHONE CONV. WITH THE NEURO THIS MORNING I AM QUESTIONING IF WE ARE NOT BACK TO SQUARE ONE. SHE DOES HAVE SOME SYMPTOMS OF PD HOWEVER HOWEVER NO EXTERNAL SHAKING. SHE HAS INTERNAL SHAKING INTERMITTENTLY. SHE HAS GONE THROUGH HELL AND I GUESS WE WERE SO TRAUMATIZED BY THE 3.5 YEARS OF BEING MISDIAGNOSED THAT EVEN PD SOUNDED GOOD WHEN HE THE DOCTOR FIRST DIAGNOSED IT. I HAVE TRIED TO GIVE YOU AN OVERVIEW OF OUR SITUATION AND AM WILLING TO LISTEN TO ANYBODY‘S SUGGESTION. BUT I AM WELL AWARE OF WHAT WAS MENTIONED BY CHARLES MEYER THAT IT TAKES THE COOPERATION OF THE PATIENT, CAREGIVER AND THE DOCTOR. MEDICINE CHART 12-96 PANCREAS ARTANE 2MG 2-3 X DAY EFFEXOR 25MG 4XDAY VICODIN 120MG 5XDAY LODINE 300MG 5XDAY DISPERDAL 1.0MG 2XDAY ATIVAN 1MG 5XDAY LESCOL 20MG THIS ONE WAS STOPPED AS OF A MONTH AGO EVEN THOUGH HER CHOLESTEROL IS OVER 329 AND TRIGLYCERITES ARE 604. Thank you for allowing me this long letter. Henry Guttentag([log in to unmask])