- CASE FILE
Atonaumic dystrophy, Ehlers Danlos, and Mast Cell activation. The list goes on and on. So many specialists and labels and no answers/relief.
ABOUT THIS CASE FILE
Everyday I suffer with postural hypotension and tachycardia, dermatographia, hives/flushing, joint pain, vision problems, GI issues (all of them), urinary dysfunction, joint pain, headaches. I’ve been told I have the medical history of a 90 year old woman, yet I am only 33. I have been hospitalized on several occasions. I have had a cholecystectomy and total hysterectomy in search or relief. I have seen a specialist for every major body system, always ending up with another referral, until finally, they just started saying they don’t know where Else to refer me to. I’ve been given so many labels, but no answers or effective treatment. I have been diagnosed with Mast Cell Activation Syndrome, Ehlers Danlos type 3, autonomic dystrophy, Hashimoto’s thyroiditis, and anxiety. There is no explanation about what is going on in my body. I eat only once a day, yet I do not lose weight. My PCP equated my body attacking itself to trying to give a cat a bath. I take a handful of pills three time a day, every day. My medications include midodrine, Guanfacine, Pertzye, cererizine, famotadine, Celebrex, levothyroxine. I feel the medications are just treating the symptoms as my my health continues to decline. I’ve had so many tests with no conclusive answers as to what is robbing me of my life. I am married with two children. My quality of life is so diminished, all I want to do is nothing. My illness is effecting my marriage, my job, my mental health. I just want to find some answers as to what is causing my body to fail. I want my life back. I want to enjoy the time I do have with my family. I work full time as a social worker and I’ve refused disability despite the urging of my doctors. I refuse to give up. I refuse to stop moving. I refuse to stop fighting, because when I do, this mystery will literally consume everything I have left.