I have Aggressive Systemic #Mastocytosis (among other things) and since October, all of my labs from my oncologist and my primary care doctor are all wacky and seem to be getting more out of sorts. My wbc has been down to 1.0.0.47 my rbc, hgb, hct, are all low too now. My potassium is so low I’m 80mEq a day of infusions, and nobody can seem to figure it out. I have seen my Hematologist/Oncologist, my GI, my Rheumatologist, and my GP and nobody can understands what or why this is happening to me.

I’m now on infusions about 21hrs every day and I’m so tired of being tethered to this tube and pole....and as of now it looks like this may be a life long therapy. If anyone has ever had this type of thing happen, how did you figure it out? Thanks in advance fellow warriors

#Lupus #HEDS #sjogrens #RheumatoidArthritis #SystemicLupusErythematosus #ChronicIllness #Hypokalemia #Mastocytosis #asm #MastCellDisease #GIDiseases #Ivtherapy