my story
DECEMBER OF 2017 FEW DAYS BEFORE CHRISTMAS I WAS DIAGNOSED WITH THE FLU. ALSO CHECK A RED SPOT THAT HURT ON ROOF OF MY MOUTH FOR STREP. IT WAS NEGETIVE. MEDICINES HELP MY FLU SYMPTON IN A COUPLE OF DAYS, NO MORE TEMP AND FELT BETTER OTHER THAN SORE IN MY MOUTH. SORE GOT BIGGER AND MORE SHOWED UP. MY EYES STARTEDTO HURT AND GOT RED. DOCTOR SAID IT WAS PINK EYE AND GAVE ME MED DROPS, THEY DID NOTHING FOR THEM. LONG STORY SHORT MY THROAT GOT WORSE AND EYES CONTINUED TO GET WORSE. WENT TO ENT, OPTOMOLIGIST, RHUEMOTOLIGIST(SPELL CHECK..LOL) HAD NUMEROUS BLOOD WORK UPS AND NOTHING WAS FOUND WRONG. MY DOCTER AT THE CHILDRENS CLINIC CONTACTED CHILDRENS HOSPITAL IN NEW ORLEANS AND SET UP A TEAM TO TRY TO FIND ANSWERS. I WAS ADMITTED ON MONDAY FEBRUARY 3RD I THINKIT WAS, THEY WENT STRAIGHT TO WORK DOING MORE BLOOD TESTS, ECOCARDIGRAM, SONOGRAM AND THEN A GI SCOPE OF MY THROAT. MY PARENTS WERE SHOWN IMAGES FROM THE SCOPE AND THE DOCTOR ASKED WHAT WASHING DETERGENT THEY USED, IMMEDIATELY MY DAD KNEW THEY THOUGHT OF THE TIDE POD CHALLENGE THING. I HADNT DONE THAT OF COURSE BUT THE SCOPE SHOWED BLISTER AND LESIONS FROM MY LIPS, TONGUE AND THROAT STOPPING AT STOMACH. I FORGOT TO SAY THAT BY THE TIME I GOT TO NEW ORLEANS THE BLISTERSANS SORES HAD GOTTEN WORSE AS TIME WENT ON.. MY LIPS, TONGE AND THROAT WERE BADLY INFECTED MAKING WALLOWING/EATING ALMOST IMPOSSIBLE. THEY PUT ME ON MANY IVS IN THE HOSPITAL AND FED ME THROUGH THEM. DURING THE SCOPE THEY DID BIOPSIES ON BLISTERS FROM ALL AREAS. FINALLY 2 OR 3 DAYS INTO MY STAY THEY DIAGNOSED ME WITH MUCOUS MEMBRAME PEMPHIGOID. WOW WAS ALL OF OUR FIRST RESPONCE, THE DOCTOR THAT TOLD US HAD TO GOOGLE IS TO SPELL IT, MOST OF THEM HADNT HEARD OR KNEW LITTLE ABOUT IT. DERMOTOLIGIST THERE FOLLOWED UP WITH ME AND SHE IS GREAT. AFTER I LEFT CHILDREN HOSPITAL THEY GOT BACK THE RESULTS FROM NEW YORK ON BIOPSIES SENT THERE TO CONFIRM DIAGNOSIS. THEY CAME BACK SAYING ITS MORE PEMPHIGUS VULGARIUS THAND PEMPHIGOID ALTHOUG THEIR WERE SOME POSITVE PEMPHIGOID RESULTS. SO I GUESS I HAVE BOTH. LUCKY ME! IN THE MONTHS SINCE HAVE BEEN ON DIFFERENT MEDS, AND PREDISONE OF COURSE TRYING TO GET INTO REMISSION. AS OF NOW IVE RECENTLY HAVE BEEN GETTING RITUXIAN INFUSIONS, MY 4TH ONE IS SCHEDULE FOR 4 DAYS FROM TODAY. MY PRESNISONE IS A LOWER DOSE NOW BUT BLOOD WORK SHOWS LIL CHANGE, HOPEFULLY I GET INTO REMISSION SOON.
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