The story of Joy
So I knew as a child that there was something wrong with me but I didn’t know what it was. From the age of six I remember having burning feet, and I’m not talking about just a little bit of burning I’m talking about my feet felt like they were on fire, on many occasions even during the dead of winter I used to have to stick my feet out the car window to get some sort of relief.. my other huge symptom was I had to pee every 15 minutes regardless of me drinking very little. Fast forward to when I turned 35, everything came to light when I met with a doctor who specialized in Mast Cell Activation Syndrome (MCAS) and she explained that all of my medication reactions that I’ve had all my life, my fatigue & body pain, bloating, constipation, some meds being anaphylactic and my feet burning was because I had MCAS 😳 I was shocked because I had NEVER heard of it before, but I was so grateful to get a diagnosis and to begin treatment! Fast forward a year after that after many failed appointments with urologist to figure out the peeing issue, I finally went to a nephrologist even though my kidneys were fine and explained everything that was going on with that and he immediately said you have diabetes insipidus! 😳 I went for a 6-8 hr water deprivation test where you have to withhold fluids for over 12 hours, and still peed like a racehorse. I’m also very grateful that I’m on the medication for that which helps a lot of symptoms. I also have dysautonomia which is dysfunction of the nervous system & it causes a lot of symptoms. I’m still struggling a little bit but I’m a lot better than I was over 4 years ago I am now almost 40. MCAS can be hereditary and while my son does not struggle with that condition he struggles with a different condition sort of like MCAS, called hereditary alpha tryptasemia. Pretty sure that’s the genetic trait that we both share, so I have it as well plus MCAS.
My Hope Is that somebody else sees this and gets their answer 🥰ðŸ˜ðŸ’ª