- CASE FILE
I need a Dr. House team to figure me out, I am a medical conundrum of issues no one has ever heard of before. Walking AI handbook.
ABOUT THIS CASE FILE
I have a multitude of autoimmune diseases. Celiac, POTS, MALS, APS, SCAD, Osteoarthritis, Fibromyalgia, Osteomalacia, Osteopenia, chronic headaches, weight gain, weight loss, I can go on for days. ALL my doctors agree I have an autoimm...
I have a multitude of autoimmune diseases. Celiac, POTS, MALS, APS, SCAD, Osteoarthritis, Fibromyalgia, Osteomalacia, Osteopenia, chronic headaches, weight gain, weight loss, I can go on for days. ALL my doctors agree I have an autoimmune they are missing. Is it FMD, MS, Scleroderma, Sjogrens... NONE of them know what to test for or even how to test for them. It is always "go to mayo". I have received this recommendation from 6 different doctors. I cannot afford to go to mayo. I live in an area where we have what I call boo boo hospitals. Anything more than 2 stitches needed? They ship you off over an hour away. With those hospitals, they have hospitalists. If there is one thing I hate - it is a hospitalist. They don't care to hear your "history", they know better than you do. These people almost killed me multiple times for NOT LISTENING. I need a TEAM of doctors to listen. I need a GI, Rheum, Cardiologist, Neurologist, Urologist, etc to sit in a room and LISTEN to me, to hear what is going on. Each thing is playing off the other, they are all related. I have POTS, which is neurological, but affects my heart and blood pressure. I have MALS, which was Dx'd by a neurologist, but affects my stomach. During surgery for MALS, it triggered APS, which caused 2 SCAD's with heart attacks, a splenic infarct and weight loss of 70lbs in 2 months before the doctors would listen to me and test me for APS. Yes, I Dx'd myself, told them to "rule it out" and guess what? I was RIGHT. I am now on blood thinner injections daily and nothing more is being done because no doctors around here understand APS, SCAD's, Celiac, or POTS. I am a walking medical study paper. Unfortunately most of my stuff my children have inherited and now they are suffering. We NEED answers ... yesterday. I would like just ONE DAY where I don't question if today is the day I am going to die - I'm not even 50 yet. I would like one day that I am not in extreme pain just trying to go to the bathroom. I would like someone to figure out why my immune system is attacking every single organ in my body that hasn't yet been removed. I would like one day where I'm not falling asleep standing because of chronic fatigue. I just want one day a month where I feel "normal". Is normal even a real thing??