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sarcoidosis

Debi

Message 11 of 21 Previous Next



I was dx Dec, 1985 of Sarcoidosis. This is a disease that can affect any major organ in your body...heart, lungs, liver, spleen, kidneys,skeletal system, eyes... The only known treatment that I am aware of is Predinosone (steriods. This is a good/wonder drug, but it has SOOOOOOOOOOOOO many side effects if taken for long periods of time. Example...there's instant weight gain!!!!!!!! Soft brittle bones, Free bleeders,hard to heal wounds, diabetes... It's mostly in black females and frequently diagnosis between the ages of 25-35 years old. There are 3 known phases of this that (reportedly) get progressively worse. I've been told that once you have this disease, you never get rid of it. I've had the severe headaches on one side only, which turned out to be a swollen paroited (check my spelling)gland caused by the sarcoid. Eyes extremely sensitive to any light, shortness of breath, wheezing, night sweats, high temp and drastice weight loss....THEN AS A LAST RESULT I TRIED THE STERIODS, AND WITHIN THREE DAYS, I COULD TELL A HUGE DIFFERENCE, AND BOY DID I GAIN WEIGHT!!!!!!!!!!!!!!!! THAT WAS THE BAD NEWS.....NOW FOR MY GOOD/BLESSED NEWS. I HAVE BEEN OFF STERIODS SINCE APRIL, 1987. I HAVE NEVER HAD A PROBLEM FROM THAT DAY TO THIS ONE. I WAS HOPING TO START A SARCOID SUPPORT GROUP LOCALLY AND NATIONALLY, ANYONE INTERESTED?????

 


   
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