Guest guest Posted January 17, 2010 Report Share Posted January 17, 2010 I had never heard of sarcoid till 11months ago had a heart attack then drs said we need to talk after surgery , stayed in hosputal fo 2 weeks , to only find out i had sarcoid in my lungs and abdomen did biopsy , Ct . pet Ct the usual started treatment on prednisone stayed on it till 9 weeks ago said lungs were clear ok but in the mean time sarcoid came out on skin like gang busters but any way to make a long story short , sarcoid came back in lungs stage 2 found out last month , and in abdomen but since march last year have been having weakness on left side of body in arms and legs also sharp pains on right side of brain that will double me over some time , weakness on left side gets worse and stinging in hands and feet at times but the sharp pains on right side of brain , and headaches are worse my question is Drs in this area don,t seem to know much about neurosarcoidosis , closest hospital with top drs i go to is 78 miles away from my home so besides running a bunch of tests how do you convince your dr that you have something else going on besides just sarcoid in you chest , also have dropped a ton of weight in march i was wearing a size 42 pants am now in 34 ,s pain in brain at times drives me crazy any advice or direction would be appreciated Tim In Florida -- Crenshaw Quote Link to comment Share on other sites More sharing options...
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