MRI

‘The neurosurgeon apologized profusely, looked me in the eye and said, ‘You were right.’ She was walking all night, screaming bloody murder.’: Mom of chronically ill child urges parents ‘if you feel something is wrong, it probably is’

“During the day, she was completely normal. But at night she would pull out her hair and headbutt her bedroom wall in her sleep, begging me to ‘make it stop.’ She was deteriorating. I had to fight for answers. I had to beg for care for my very complex child. My gut was telling me something was being missed.”

‘I have no idea what that is.’ He knelt down while I was on the toilet. The color left his face.’: Woman battles postpartum depression, degenerative disk disease, ‘I made the decision to change my attitude towards myself’

“When the doctor came in, he immediately saw the huge chunk of flesh. He looked extremely shocked. I was in the most pain I’d ever been in my life. It honestly felt worse than giving birth. The doctor said, ‘Okay, I’m going to gently pull this out of you and figure out what we need to do next to get whatever that is out.’ Everyone’s face was of shock.”

‘Calm down a little. Sleep it off.’ My baby had an egg-sized lump on his skull. I was told I was ‘just a stressed out momma.’: Baby diagnosed with Chiari Malformation after mom’s concerns brushed off for months, ‘I’m so glad I trusted my gut’

“Rowen’s skull was swelling. He started grabbing his head constantly and screaming. He was throwing up non-stop and couldn’t even turn his head. I kept hearing time and time again from doctors, ‘You just need some sleep.’ It got to the point where every time they saw me, they asked, ‘Are you getting sleep? You need it badly.’ I started to doubt myself. Was I going crazy? But deep down, I knew something wasn’t right. I decided to go with my gut. Enough was ENOUGH.”

‘If we waited 2 more weeks, you would’ve been paralyzed from the neck down.’ I was in and out of consciousness. Death wasn’t the only thing on my mind.’: 15-year-old undergoes brain surgery after feeling dizzy, discovers rare chronic brain condition, Type 1 Chiari Malformation

“I knew something was very wrong. I was barely able to hold myself up. ‘Really Jen? Pull it together.’ No one had answers. All I heard was, ‘I think you’re depressed.’ I felt like someone had filled my head with cement. At this point, I had given up. I convinced myself I was out of my mind. I laid in that MRI machine and lost track of time. I felt like my life was over at 15. The tech pulled up the images on the computer. ‘You’re going to need a neurosurgeon.’”

‘Did yoga do this to you?’ I woke up seeing double. Things took a turn. ‘I know it’s a lot to take in.’ I was shocked.’: Young woman comes to terms with multiple sclerosis diagnosis, ‘I won’t let this hold me back’

“I remember sitting in the waiting room. I lost all control of myself and burst into tears. What if the MS diagnosis was wrong? It felt wrong! I just wanted to opt-out of this, but there was no way. Still crying, I signed my name. All I felt was a little pinch before I went completely numb.”

‘What’s that? It could be something sinister. You might have a tumor.’ I got fired for being ill.’: Young woman diagnosed with Ehlers Danlos Syndrome after countless tests, ‘I was getting sicker and sicker, but with no answers’

“I was sobbing in bed one night angry at God. ‘Why won’t you take the pain away?!’ I had worked so hard despite being unwell, pushing myself to achieve. I got the grades to study music, my true passion, but was too unwell to go! I was gutted. The emergency doctor uttered the word ‘stroke.’ I was in disbelief. I was only 19 years old.”

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