- CASE FILE
I need Dr. House!10 yrs.+, multiple aflictions, tests and specialists. Can not find a cause to date.
ABOUT THIS CASE FILE
I was a very active person, worked out, ran, coached basketball for 18 years and worked 40 hours a week. Then my entire life started turning upside down. I started falling about 10 years ago. I began losing sensation and motor ability in my lower legs and feet, sometimes hands. My hands and feet turn white, feet dark purple, swell, red, inability to decipher temperatures. Muscles would twitch out of my control. Unable to sleep due to pain, burning, myscle cramps, stabbing, etc. Had gallbladder removal, then Sphincter of ODI. Pneumonia. Then ended up in hospital after no bowel movement for 7 days. My entire nervous system started shutting down. I couldn't walk or move and was shaking all over. Diagnosed with Gastroparesis, Hypo Motility Disorder. Pelvic Floor dysfunction down the line. Bladder is not functioning properly or digestive system. I lose my thought process during conversations, forgetful. I also have Schwannamatosis, Migrains, Fibromyualgia, multiple bilateral kidney scysts, fibrocystic breasts, cysts removed from ovaries, plugs in eys due to dry eye. Stopped coaching, cut my work hours and I continued to decline. It is impossible for me to continue. my quality of life has drastically changed. Repeated NCS's and EMG's show decline in Sensory Motor nerves as well as Autonomic Dysfunction now. I use a cane at times and I have a service dog. I am very stubborn and I try, many times I don't succeed. I have no control over my bowel movements as I am now on purelax 3x's a day and colace at night because my insurance company will not approve medication. Their suggested fix was "eat more fiber, drink more water and excercise". Totally insulted! I am VEGAN I don't think I could eat more fiber than that. I drink at least 72 ounces of water a day, I try to walk when I can but there are days I am not up to it. I am exhausted, I am in constant pain, my social life is no longer alive. I don't go far from my house because if I have to have a bowel movement, I need to be near a toilet due to the laxatives. My depression, PTSD and anxiety has increased. When I go to a new specialist that I'm sent to their words are "boy, you sure have a lot going on with you". Yes, I do. Can someone please help me find the cause? I was diagnosed with Sensory Motor Polyneuropathy & Autonomic Neuropathy, Pelvic Floor Dysfunction, my bladder isn't woking properly (I just found this out 4 days ago), my sphincters in my colon/anus are not functioning properly. I had gallbladder surgery 2 years ago and ended up with Sphinicter of ODI. Seems like a common theme, sphincters? My Neurologist can't find a cause to all my medical problems. Tested for Lupus 2 x's, Sjrogens, vitamin deficiancies, RF, Panaplastic Panel, Anti hu's, Arsnic, Lead ,free light chains, 24 hour urine, Surel Nerve Biopsy, fat pad bopsy had POSITIVE ANA, blood work is norma but lhad POSITIVE ANA,Poprophian totals were abnormal (but Neuro said she didn't feel it was a factor), EmG's & NCS's show decline in functional ability. I'm sure I'm forgetting something because my days are spent going for this test or that test and appointments. I see several specailists and PT as well as my PCP. I have so much going on and a cause hasn't been found yet. I've been told that I probably have some rare genetic disease thats out there people aren't aware of. This is very frustrating, upsetting and I feel like I am just going in circles trying to find answers. I've received some, but not a cause. No one can tell me. Several of my doctors have stated more than once they believe all my conditions/aflictions are due to a neurological disease. What I need is Doctor House. Someone who will sit with a team, have a white board and start crossing things off to get to a diagnosis. Thats all I want, a diagnosis so that hopefully it can be treated. There is much more medical information and symptoms but I could not find them as a choice on the website. Thank you so much for taking the time to read my story and I pray there is someone out there that can help me.