Question: I HAVE ALREADY WRITTEN BUT I WILL WRITE AGAIN. SORRY ABT THE FULL CAPS BUT I LIKE WRITING W/ FULL CAPS. I LEARNED TO WRITE IN FULL CAPS WHEN I WORKED IN RADIO AND EVERYTHING WAS WRITTEN IN FULL CAPS FOR THE ON-AIR GUYS TO SEE TO READ.
I HAVE BEEN DIAGNOSED W/ MYASTHENIA GRAVIS AND THE MED THAT I AM ON IS PYRIDOSTIGMINE BR. 60mg 3x A DAY + i TAKE AN OXY ON SUNDAY SO I CAN GO TO CHURCH W/ NO PAIN. I WENT TO MY CHIROPRACTOR AND THE ADJUSTMENT WAS SO TERRIBLY PAINFUL THAT I WAS IN PAIN FOR MANY DAYS ESPECIALLY IN THE SHOWER. IT WAS TERRIBLE AND MY CHIROPRACTOR IS VERY GOOD BUT THIS WAS SOMETHING ELSE. I GO TO THE WEB TO GET INFO AND IT LOOKS LIKE A DEATH SENTENCE. IS THAT WHY THE INTERNAL MEDICINE SPECIALIST DID NOT COME TO SEE ME TOO OFTEN? HE CAME TO MY ROOM BUT HE NEVER STAYED TOO LONG AND HE CANT BE THAT BUSY. HE DID TELL ME THAT THERE R 10 IN THIS AREA THAT HAVE MYASTHENIA GRAVIS BUT I AM NOT SURE IF I AM NUMBER 10 OR NUMBER 11 & I WONT BE SEEING THE INTERNAL MEDICINE SPECIALIST UNTIL MARCH. I WANT TO BEGIN A SUPPORT GROUP BUT IS THIS A DEATH SENTENCE AND SHLD I MOVE TO BE NEAR MY GRANDCHILDREN IN MY LAST DAYS? FAMILY IS TELLING ME TO MAKE SURE I HAVE A LAST WILL & TESTAMENT MADE OUT. HAVE THEY BEEN TOLD MORE THAN I HAVE BEEN TOLD? I SEE THAT ARISTOTLE ONASSIS DIED AT AGE 69 & I AM 68. I THINK I HAD THE BEGINNINGS OF THIS THING SO FAR BACK IN MY TEENS AND MAYBE EVEN EARLIER. I WAS A FOOTLING BIRTH AND AT AGE 9 MONTHS I HAD PNEUMONIA THEN I HAD PNEUMONIA AGAIN JUST BEFORE I TURNED 16. AT AGE 21 WHEN I GOT MARRIED TO MAKE A BED WAS LIKE I WAS DOING A DAY'S HARD LABOR. I CLD NOT FIGURE OUT WHY THIS WAS SO & I HAVE NEVER HEARD OF THIS THING. I GO TO SUPPORT GROUPS ON LINE OR CHAT ROOMS AND THERE IS NO ONE IN CHAT ROOMS. R THEY ALL DEAD OR HAVING BREATHING PROBLEMS? LATE LAST FRIDAY I WAS UNDER STRESS & OUT OF TOWN & SHOPPING & WHEN I GOT HOME 2 HOURS LATER I CLD NOT BREATHE AND I CALLED 911. NOW BEFORE MY DIAGNOSIS I HAD BEEN INER SO OFTEN THAT THE HEAD ER NURSE KNOWS ME & I THINK WE R ACTUALLY RELATED. NO KIDDING. PLEASE TELL ME THE HONEST TRUTH ABT THIS DISEASE AND IS IT REALLY REST THAT CAN TONE THIS THING DOWN?

OH TY SO MUCH FOR YR ENCOURAGING RESPONSE.
I WAS AT MY DOCTOR'S ON FEB. 10th, 2016 & SHE TOLD ME THAT MY MUSCLES WLD ATROPHY SO THAT GOT ME REAL DEPRESSED
&
I BEGAN TO WRITE EMAILS TO MY DAUGHTER THAT IS AN "ULTRA SOUND TECHNOLOGIST" IN XXXXXXX B.C.
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MY NEPHEW THAT IS 60 & I HAVE NOT SEEN HIM FOR A LONG TIME AS HE IS BUSY RUNNING A SCHOOL IN THE DOMINICAN REPUBLIC
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MY 2 GRANDCHILDREN THAT R 8 & 5 YEARS OLD IN XXXXXXX B.C. IN FRENCH IMMERSION
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I ALSO MADE FINAL PHONE CALLS TO MY DAUGHTER
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TO MY NEPHEW
BUT I HEARD FROM MY DAUGHTER
BUT I NEVER HEARD FROM MY NEPHEW
SO I NEED MORE INFO ON THIS RARE DISEASE
&
TY FOR ALL THE POSITIVE INFO.
I DONT SEE THE LOCAL INTERNAL MEDICINE SPECIALIST UNTIL IN A MONTH'S TIME
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THAT IS TERRIBLY LONG
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AT THE HOSPITAL WHEN I WANTED TO SEE HIM, HE NEVER SEEMED TO HAVE TIME
& THAT GOT ME ANXIOUS & THINKING THAT THIS OLD LADY WAS ON HER LAST DAYS, SO WHY SPEND TIME w/ HER. JUST LET HER GO HOME
& DO HER GOOD BYES
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GET HER "LAST WILL & TESTAMENT" TOGETHER
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GET READY FOR THE END.
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THAT IS WHY I WAS DEPRESSED
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I CLD NOT SLEEP ALL NIGHT. I WAS DEPRESSED AND I CRIED MY LAST CRIES SINCE MY DOCTOR HAD TOLD ME THAT MY MUSCLES WLD ATROPHY SO TO ME THAT MEANT THAT I WLD HAVE TO BE IN A "NURSING HOME" SOON.
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I GOT A BIG LECTURE FROM MY PASTOR & MY DOCTOR ABT TAKING OXYS.
WHAT IS YR OPINION ON TAKING OXYS?


REPLY CONTINUED.......
CT THORAX TESTING I WILL OBTAIN RESULTS ASAP FROM MY DOCTOR'S OFFICE
&
THE "MYASTHENIA SERUM ANTIBODIES TESTING" WILL BE DONE IN WINNIPEG ON FEB, 17th, 2016 @ 1:00 p.m.@ AN APPT THAT I HAVE BEEN WAITING FOR 6 MONTHS CAUSE I HAVE A VERY NUMB RIGHT HAND
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MOSTLY THE PINKY FINGER & DOWN FROM THE PINKY FINGER DOWN THE OUTSIDE PALM OF MY RIGHT HAND WHICH AT TIMES MAKES ME FUMBLE AND CHANGES MY HANDWRITING AS WELL AS PROBLEMS w/ PERSONAL CLEANSING
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WHILE AT THE HOSPITAL IN XXXXXXX 13th 'TIL XXXXXXX 28th, 2016 I FUMBLED SOME MEDS & THEY FELL ON THE FLOOR & THE SOCIAL WORKER ACCUSED ME OF THROWING MY PILLS ON THE FLOOR WHICH I NEVER EVER DID, THE PILLS FELL OUT OF MY RIGHT HAND BECAUSE OF THE NUMBNESS
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THUS I WAS MISUNDERSTOOD.
I WAS I N HOSPITAL w/ THE ATTITUDE THAT THEY WLD JUST TELL ME EVERYTHING ON HOW TO DEAL w/ THIS BUT NOT MUCH WAS SAID
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I HAD NEVER HEARD OF THIS DISEASE
& THAT WAS FRIGHTENING
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TO READ ABT IT ON GOOGLE
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ELSEWHERE IT IS ALL VERY SCAREY.
ALL I SEE IS NEGATIVE STUFF
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THIS I SEE DEATH
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THE END OF MY LIFE
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I AM NOT WILLING TO DIE YET BUT ARISTOTLE ONASSIS DIED AT A VERY YOUNG AGE OF 69
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I AM 68.
I WAS LOOKING FOR A CHAT ROOM BUT I CLD NOT FIND ANYTHING.
WHEN I FIRST HEARD OF THIS DIAGNOSIS
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I WAS TOLD THAT 10 PEOPLE HAVE "MYASTHENIA GRAVIS" HERE IN MY AREA
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I SERIOUSLY CONSIDERED OF GETTING TOGETHER A SUPPORT GROUP BUT FIRST I HAD TO SPEAK TO THE LOCAL "INTERNAL MEDICINE SPECIALIST" SINCE HE WLD KNOW MORE ABT THESE OTHER PATIENTS AND IF THEY WLD BE WILLING TO ATTEND A "SUPPORT GROUP" I HAD PLANS TO OBTAIN GRANTS FEDERALLY, PROVINCIALLY, MUNCIPALLY & OTHERS LOCALLY FOR FUNDING
& THEN GO FROM THERE, BUT i KNOW THAT TO APPLY GRANTS ONE MUST HAVE A PLAN FOR WHAT THE FUNDS WILL BE ALLOTTEDD FOR.
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IF I AM DEPRESSED I CANNOT RUN A "SUPPORT GROUP" I MUST BE WELL AND DOING WELL ON THE MEDS
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ALL THE PRESCRIBED TREATMENT.
SO I TY FOR ALL YR POSITIVE WORDS OF ENCOURAGEMENT WHICH I SHLD BE GETTING LOCALLY FROM MY PHYSICIANS
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MAYBE IT IS WHAT IS LACKING HERE LOCALLY & SO MAYBE THE "SUPPORT GROUP" CAN BE THE POSITIVE ENCOURAGEMENT THAT IS CURRENTLY LACKING
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R THERE OTHERS THAT R DISCOURAGED LIKE I WAS?
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TO BE SEEN
.i KNOW ALL THE PEOPLE TO CONTACT REGARDING THE FORMS FOR GRANTS. ALL THAT WAS DONE WHILE I WAS IN THE HOSPITAL. I WAS ACCUSED BY A HEAD NURSE THAT I WAS TREATING THE HOSPITAL STAY "LIKE A HOTEL" AND "CHRIS LARK" CAME RUNNING OUT BEHIND HIS NURSING DESK AND RAN INTO MY ROOM FASTER THAN A BULLET AND SCREAMED AT ME, "ANNE U R TREATING THIS PLACE LIKE A HOTEL"
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I TOOK A BOX OF TISSUES & MY RESCUE ASTHMA PUFFER
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i CURLED UP IN BED AS FAR AWAY FROM THE DESK AS I CLD
& I CRIED
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I COVERED UP MY HEAD
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WAITED FOR ENCOURAGEMENT TO ARRIVE, BUT NOTHING DID. MY SPEECH GOT SLURRED
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I CLD NOT SPEAK TO A FRIEND THAT PHONED ME AT THAT TIME.
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LUNCH CAME
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I WAITED TO HAVE SOMEONE COME TO MY ROOM
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SPEAK TO ME BUT NO ONE DID
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I HEARD "CHRIS LARK" SAY, "LEAVE HER ALONE, SHE WILL COME AROUND."
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I HAD NOT EATEN LUNCH, SO I GOT UP
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ATE LUNCH
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I HAD TO PUT UP w/ THAT WICKED HEAD NURSE ALL DAY, BUT I HAVE REPORTED HIM CAUSE HIS BEHAVIOR WAS NOT APPROPRIATE IN A HOSPITAL WHERE PEOPLE R ILL
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TRYING TO COPE w/ STRANGE DIAGNOSIS THEY HAD NEVER HEARD OF.
I STRONGLY FEEL THAT "CHRIS LARK" SHLD GET FIRED BUT I THINK HE BELONGS TO A UNION
&
THAT UNION WILL SUPPORT HIM.
SAD SITUATION.
WHAT IS YR OPINON ON ALL THAT I HAVE TOLD U HERE?