John

JOHN (JACK) LAUBY.

I AM 68 YEARS OLD. I WAS FIRST DIAGNOSED WITH MYASTHENIS GRAVIS IN 2007.

AT FIRST I WAS HAVING TROUBLE WITH DOUBLE VISION AND DROOPY EYELIDS. I WENT TO SEE AN OPTHAMOLOGIST AND HAD VARIOUS EYE TESTS AND EVEN A BRAIN SCAN TO RULE OUT AN ANEURYSM. I WAS THEN SENT TO A NEUROLOGIST WHO DID A BLOOD TEST AND DIAGNOSED ME WITH OCULAR MG. I WAS IMMEDIATELY PUT ON MESTINON. I CONTINUED TO HAVE FURTHER ISSUES WITH SWALLOWING AND DRINKING. I THEN WENT TO SEE SECOND NEUROLOGIST AND WAS TOLD THAT I HAVE GENERALIZED MG.

I WAS PUT ON A HIGHER DOSE OF MESTINON (PYRIDOSTRAMINE) AND PREDISONE. IN 2010 I GOT A GI INFECTION.  MY WIFE TOOK ME TO THE ER WHERE THEY HAD TO PUT ME ON IV FLUIDS BECAUSE I WAS DEHYDRATED, THEY KEPT ME IN THE HOSPITAL FOR TWO DAYS. I TOLD THEM I HAD MG AND WAS HAVING TROUBLE RECEIVING MY MEDICATION ON TIME I WAS HAVING TROUBLE EATING AT THIS TIME. I HAD THEM DISCHARGE ME FOR THE GI INFECTION THAT I WAS THERE FOR.

MY WIFE THEN TOOK ME TO THE HOSPITAL WHERE MY NEUROLOGIST HAD PRIVILEGES AND WAS IMMEDIATELY PUT IN THE ICU UNIT. BY THE TIME I GOT THERE I WAS UNABLE TO EVEN UNDRESS MYSELF TO GET INTO THE BED. I COULD BARELY TALK, AND WAS UNABLE TO EAT OR SWALLOW. THEY HAD TO GIVE ME MY MEDICATION BY IV. I HAD THREE PLASMA- PHERESIS TREATMENTS THIS PROCEDURE BROUGHT ME BACK AROUND.

ONE YEAR LATER I WAS BACK IN THE IcD AGAIN. I DO NOT KNOW WHAT TRIGGERED THIS CRISIS AT THIS TIME. ALL I CAN THINK OF IS THAT MY UROLOGIST PRESCRIBED AN ANTIBIOTIC FOR A BLADDER INFECTION THAT I WAS TOLD WAS SAFE TO TAKE (I HAD TO STOP TAKING IT AFTER THREE DAYS AS IT WAS CAUSING ME TO SLUR MY WORDS AND TROUBLE SWALLOWING). THE SECOND EPISODE DID NOT CAUSE ME THE MUSCLE WEAKNESS IN MY EXTREMITIES THAT I EXPERIENCED THE FIRST TIME. I WAS STILL UNABLE TO EAT, DRINK OR TALK.

I AGAIN HAD THREE ADDITIONAL PLASMAPHERESIS, WHICH AGAIN BROUGHT ME AROUND. I CURRENTLY HAVE IVIO TREATMENTS ON A REGULAR BASIS RECOMMENDED BY MY DOCTOR. THESE TREATMENTS HAVE KEPT ME IN A STABLE CONDITION. I HAVE BEEN ABLE TO EAT PRETTY MUCH ANYTHING WITHOUT ANY ISSUES. I HAVE NOT HAD ANY DOUBLE VISION FOR QUITE SOME TIME.

I CURRENTLY TAKE MESTINON (PYRODISTIMINE) TIME RELEASE AT NIGHT, CELLCEPT (MYCOPHENOLATE) AND A LOWER DOSE OF THE PREDNISONE. I IMPLORE PEOPLE TO TAKE THEIR MEDICATION AS PRESCRIBED. IF YOU ARE HOSPITALIZED DEMAND YOU GET YOUR MEDICATION ON TIME.

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