Pain everywhere.

[CountryGirl9636]

I've been 10+ yrs searching for answers. I had some bladder problems in 2013. Doctors did surgery. I almost died. Apparently they told me my blood vessels looked funny. They didn't know if they "knicked " me or what but I lost 8 pints of blood very quickly. They barely got me transfusion in time. I chalked it up to doctors mistake as did my other doctors. A little over a year later I was coloring with my granddaughter and I suddenly felt odd. I saw a kaleidoscope when I looked around. Luckily my neighbor came by chance at this moment to ask to borrow a tool. I went for the door and my body wasn't working right. Got it open and couldn't talk right. He rushed me to ER and there was nothing on CT so they sent me home. I languished after that. Migraines and seizures, vision loss, diplopia, vomiting and peeing blood and pain everywhere. Confusion, paranoia and always lost. Nothing. I was worked up numerous times for psychogenic seizures. I was told I was malingering or had a somataform disorder. I was sent to therapist who did more harm than good. I felt crazy. My doctors put me in physical therapy. I put myself on speech therapy. Got to love the internet. Spent 10 + yrs, 100s of doctors, 4 states and still nothing. Then came the rash. I saw a dermatologist who said I had vasculitis and he suspected with my history it was systemic. He put me on treatment. That 1 doctor doing this helped beyond belief. Not only did I start getting better but other doctors started listening. I'm now on treatment diagnosed with Bechet's, differential includes possible neuro Behcet's now. I have lesions on MRI and CT of brainwhite matter, skull (calvaria), lung, kidney. I have severe vit d deficiency, off and on elevated calcium, and igg deficiency. I have horrible mouth sores at this time and was just put on colchine. I'm currently on Azathioprine and Prednisone. It's helped a lot. I'm still very sick some of the time but at least not all the time. That 1 doctor is my hero.