Hey all. My name is Kate aka Kaujii, I've been going thorugh a year of debilitating symptoms. Some are gait disturbances, inability to walk , or at times move, severe water retention, called Anasarca. Tingling pain from my groin to my feet that feels like hot fore. I'm triple my size of what I was a year ago. I'm in severe 10/10 pain all the time. I have seen over 70 physicians, most of which shrugged me off. I laid in the hospital bed alone, months ago, as I started to lose feeling in my saddle region, and I went over my own mri's the entire year and noted that mine were clumped together vs being seperated. I wrote down adhesive arachnoiditis on a napkin before I was ushered into a 3 hour MRI. I knew something was wrong because the pain was incredible. I was released 3 hours later. I begged the doctor to keep me and take my concerns seriously- she didnt. She laughed and sent me home. I found a doctor specializing in mris like mine, in Wisconsin. He took a look at my first scans and noted I had adhesive arachnoiditis and there was no "fixing the disorder" but only focusing on palliative care to make me comfortable. He said he still didnt know much about the disorder and that I had too many complications and he could only treat the nerves. He recommended I find a specialist here because it would be too frequent I'd have to see him to adjust meds. The waitlist to see a specialist here is 2 years. I have had 6 hospitalizations, one full week at Mayo Clinic and seen 76 physicians, all in all. I am still seeking care I need. I have lost my ability to be independent and I see a doctor once or twice a week requiring me to pay 50 dollars each visit, if not more. Money has been a burden on top of everything else. Anything helps! I have so much medical bills I'm going bankrupt. Any help is appreciated! I work Monday- Friday and sitting down is really rough. As swell as standing. I'm in extreme pain all of the time. I've used all my PTO and sick time at work. My life was once is lost. I'm hoping to start grief counseling soon. I have an update: 5 veins in my legs are not working properly to pump the blood needed to get to my heart. I'll need five surgeries to kill the veins, sealing them hopefully to reroute blood to better veins and my heart can begin to function normal again. I wont stop trying to find a cure or something close to it.
I eat a strict Mediterranean diet (preferably halal)