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People Share The Medical Condition They Had Their Doctor Didn’t Believe Was Real – Part 2

By Adam Patton
January 10, 2019

Unsplash / Martin Brosy

The Cause Of His “Leg Cramps” Was Truly Disturbing

Srecka/Shutterstock

That doctor then sent me for CT scans, but they found nothing. Then they referred me to a neurologist, who instantly sent me for an MRI. They immediately saw that I tore my spinal cord in the original accident and the intense nerve pain was from a build up of fluid in the gap in the cord.

It’s uncommon but not rare; however, watching doctors Google my condition in front of me with a ‘what the heck’ expression on their faces was kinda entertaining.”

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The Doctor Was Indifferent To His Tears Of Pain

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“I was having serious back pain so I went to the ER at like midnight after being fed up for months. They told me my gallbladder needed to be removed but it wasn’t urgent, so I could have it done that week or in two weeks. I wanted it over with, but I had to defend my Master’s thesis two days later, so I said I’d just live with the pain and put it off. So I defended my thesis, my back still killing me.

That weekend, the pain got worse but I said I’d wait. As I was teaching on Monday morning (I was a TA), the pain all of a sudden got close to excruciating. By some coincidence, I had a scheduled check-up that day so I called in pain and asked if I could come in early. They said sure and I rushed to the hospital. The doctor saw me and I told him my pain was a 10. I could barely drive and I felt like a 1,000 knives were stabbing me from the inside, but he refused to take me seriously.

He told me he wouldn’t admit me to the hospital since hospitals are full of germs. Instead, he’d move up my surgery date to the next day. He told me to go around and get stuff done for it, drive home, and come back in the morning. I stubbornly did the things they needed, bloodwork, etc. I was near dying the whole time but no one would listen to me.

I finished the list of tasks and couldn’t take it anymore. I ran back up to the doctor’s office and in tears of pain, I begged the nurse to let him see me again. He saw me again but still didn’t believe me. My tears of utter pain (and I was a young healthy male) weren’t enough for him, but eventually, he decided they’d see if I could be admitted. But something went wrong, I don’t know where. I told the nurse I needed to be rushed to the ER, and the doctor then supported that decision instead.

This poor older lady wheeled me down to the ER because at that point I couldn’t really walk. She waited with me for a half hour as they found me space on a gurney in a hallway. She was my guardian angel that day and I later sent her flowers. The ER nurse pumped me with morphine. It didn’t do anything so he pumped me with Dilaudid. That stopped most of the pain except the pain in the gallbladder itself. After seven hours, I was admitted to the hospital. I lived off that painkiller like an addict all night. I had my surgery as scheduled the next day. I later found out my gallbladder had ruptured and was eating at my liver. I was at risk of going septic. My doctor admitted in a haughty way that he did not know it ruptured. It was truly an ordeal I would like to never repeat and I still thank that nurse for being the only person who actually listened to me.”

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Her Pediatrician Kept Her Condition A Secret

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“When I was a child, my pediatrician knew and had proof of part of my medical conditions. Specifically, rotoscoliosis, which manifests as deformed ribs crushing my left lung (it doesn’t fully expand). She chose to not tell me or my family. Eventually, my mom started to really think something was wrong because I always complained about my back hurting.

She ended up making an appointment with a different pediatrician and he took x-rays. When we met with him after the x-ray’s, he told us that he couldn’t do anything because it was out of his experience. He explained it the best he could but sent us an immediate referral to someone else. We met with the new doctor, showed him the previous x-rays, and he literally laughed at us.

He said there was NO way they were right because I wouldn’t be alive or at the very least not walking. He was so sure we were wrong he ordered his own tests, an MRI. Once we did that, he personally called us, not his nurse or receptionist, to apologize. He was in disbelief that I had so much going on and was still walking around like a normal kid.

Unfortunately by the time, it was all found out my rotoscoliosis had gone past the point of help. That happened when I was 8-9 and I’m now 23 years old. To this day it doesn’t matter what I tell the doctors, they don’t believe how bad it is until they see it for themselves. I went to the ER recently and they did chest x-rays. I tried to tell them beforehand my medical condition so they wouldn’t freak out. They dismissed me, then as I was standing there after they took the first one, I heard them saying, ‘Oh my God, did you see this? Look at her spine.’ The doctor in ER said, ‘Well, your x-rays look fine other than some, uh, bad scoliosis,’ and then awkwardly laughed because he realized he should have listened to me beforehand.”

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She Had To Teach The Doctor About Her Condition

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“I had always been the chubby girl since high school. About four years ago, I find out I have Lupus. I went to my rheumatologist who looked at me for a few minutes and said, ‘Your knees…where are your knees?’ I thought to myself, ‘What, have you not seen fat people’s knees before?’ I left, but her comment haunted me.

Then one night last year, I started googling fat people knees and the word lipedema came up. I immediately started crying. These were my people. I finally felt like I found my truth. Lipedema is a fat disorder where your body doesn’t store fat correctly. Therefore, no diet or exercise will remove the fat because the body doesn’t recognize it correctly. It starts during puberty and increases during other hormonal times. Its other name is painful fat syndrome, which explains why sometimes even a blanket on my lap hurt. It also explained explains why 1,200 calorie diets never worked and gastric bypass didn’t work.

But still, my doctors didn’t believe me. I had to sit one down with over 300 pages of documentation to make them understand and, even then, they were still dumbfounded.

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