At 09:58 PM 1/23/97 -0500, you wrote:
>TO CHARLES:
>
>THANK YOU FOR RESPONDING TO MY POSTING.(SEE MEDICINE BELOW) It meant so
much. Thanks
>
>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.
>
Henry
You have kept us informed about your wife's predicament.  You know, Henry,
what stays in my mind after reading these messages is your wife.  Like me,
she fears new drugs, feels safe with drugs she has tried before.  She
appears petrified when new medication is prescribed to her because of
previous side effects.  Does she read the Email messages from other PD
sufferers?  I empathize with her and sympathize with you.  Please continue
giving us updates. I'm 58 years old, have PD, and my husband is the
care-giver).  Regards
Fleurette