Living with Sarcoidosis

I WAS DIAGNOSED WITH SARCOISOSIS AT 23. I DIDNT EVEN KNOW I HAD IT. NO SYMPTOMS AT ALL. I BECAME PREGNANT AT AGE 29. HAD A BOY IN 2001. WITHIN A YEAR OF HAVING MY BABY I STARTED HAVING ALL KINDS OF PROBLEMS…NOT NECESSARILY DUE TO SARCOIDOSIS. SOME DOCS SAY THAT IT IS THE SARCOIDOSIS AND SOME SAY CAN’T BE. NONETHELESS…I’M STILL AS CONFUSED ABOUT THIS DISEASE AS I WAS THE FIRST DAY I WAS DIAGNOSED. FUNNY THING WAS THAT WHEN I WAS FIRST DIAGNOSED, MANY DOCTORS HADN’T EVEN HEARD OF THIS DISEASE. WHEN I’D HAVE TO GIVE MY MEDICAL HISTORY; MOST OF THEM THOUGHT I WAS MAKING UP A DISEASE FOR ATTENTION.

I’M NOW 36 YEARS OLD, HAVE A MULTITUDE OF MEDICAL PROBLEMS. MUSCLE AND NERVE PROBLEMS, RASHES, CHRONIC SINUS INFECTIONS, HEART PALPITATIONS, SHORTNESS OF BREATHE, CHRONIC ANEMIA GERD, CHRONIC PAIN IN EXTREMITIES AND EXCESSIVE TIREDNESS, MUSCLE STIFFNESS AND SOMETIMES WEAKNESS AND TIGHTNESS IN MY CHEST. THE LATEST PROBLEM IS KIDNEY INFARCTION WHICH AFFECTS ONLY THE RIGHT KIDNEY AND MUSCLE STIFFNESS; ESPECIALLY THE MUSCLES IN THE NECK. SOME DOCTORS SAY SOME OF THE SYMPTOMS COULD BE ( NOT A DEFINITE ) RELATED TO THE SARCOID AND OTHERS SAY COULND’T BE.

I’M TIRED OF GOING THRU THESE SYMPTOMS AND NOT HAVING ANY ANSWERS OR DIAGNOSES. I HAVEN’T SEEN A PULMONOLOGIST FOR THE SARCOIDOSIS IN YEARS…ONLY DOCTORS FOR THE INDIVIDUAL DIAGNOSES. I.E. ANEMIA GERD, MUSCLE REGIDITY AND PAIN, RASH ETC. NEVER AS A WHOLE. I WAS TOLD BY MY LAST PULMONOLOGIST THAT HE DIDN’T NEED TO SEE ME BECAUSE IN DIDN’T HAVE SARCOIDOSIS ANYMORE. SOME CURRENT DOCTORS EMPHASIZE THAT I NEED TO SEE ANOTHER PULMONOLOGIST WHERE AS OTHERS SAY IT’S UP TO ME BUT THEY DON’T THINK I NEED TO SEE ONE. I USED TO HAVE SEIZURES ABOUT 10 YEARS AGO. DOCTORS STILL CANNOT TELL ME WHY. EMG REPORTS ALWAYS COME OUT ABNORMAL. I’M JUST SICK OF FEELING SICK. I’D FEEL A LITTLE BETTER IF I HAD SOME ANSWERS, BUT NO DOCTOR I HAVE SEEN CAN GIVE ME ANY. HAS ANYONE ( IN THE PAST OR CURRENTLY) HAD THE SAME EXPERIENCE?