- CASE FILE
Chronically I'll since 13yrs old. I am now 30 and still suffering everyday with No answers and getting worse.
ABOUT THIS CASE FILE
I was an overall healthy and very active child. At the age of 13, I started getting severe headaches. As time went on, I started also experiencing weakness and heaviness in My arms and legs, to the point I could barely walk or feed myself. I kept being misdiagnosed with Migraine, tension headaches and even told "it was all in My head" and needed to see a psychiatrist. After many MRI'S and CT Scans, I was sent to University of Penn that also did an MRI and found I had Arnold Chiari Malformation type 1. I went on and had brain surgery thinking this was the answers to My issues. I didnt have any relief from surgery. The head pain is still horrible, still dealing with weakness, muscle and joint pain. Around the time I started with all the issues, I also started getting lumps in My neck. The ENT ran blood work and diagnosed Me with Chronic Ebstein Barr virus. I was told this would cause the headaches, chronic fatigue and can have flare ups from it. I did have a lump removed in 2006 and it was benign. I've tried so many medications for the head pain and the only success I had was with botox. I deal with them daily and they're so severe I have drooping and numbness in My face. Piling on top of this is more symptoms Including muscle weakness, dry skin so severe my hands bleed everywhere, lumps all over my my joints, I lose feeling in my feet during these flare ups, balance issues, my right leg becomes nearly unusableas I have 5o almost drag it across the floor as I walk. Believe it or not, things got worse. February of 19, I was rushed to the ER, because they thought I was having a TIA. They told Me once again My MRI was normal, but had an congenital abnormality. The doctors and specialists at the hospitals could only guess what could be happening and admitted to me being one of the most complex cases they had seen. However, nothing came of it. Later, My doctor ran blood work and found My C reactive protein is 4 times what it should be along with My sed rate. I've been to two rheumatologist they ran several test all negative for Lupus, lyme and sjogren's. My doctor really felt I had polymyalgia Rheumaticia, but they said I was too young to have that. So I have inflammation going on throughout my entire body, nearly nonstop fevers, as well as all the symptoms previously listed. I'm in pain constantly and always so tired. The only relief I had was when I was put on a strong dose of steroids, but they cant leave me on them because they obscure the test results and of course the long term side effects. I just want answers, I want My life back. I now have a 1yr old son and everyday is a struggle. After I had him September of 2018, it seems My body flared up and My symptoms got worse. I'm so tired of being sick and tired and treated like I'm a hypochondriac when really I'm suffering. I want to be happy again. I forgot what it feels like not to be in pain. Thanks for listening to My story.