Doctors Reveal The Rarest Disease Discovered in Their Patients

10. When Not Even Your Doctors Understand What’s Going On This story isn’t from a doctor, but from the patient themselves, since no doctor seems to… Trista - October 11, 2021

10. When Not Even Your Doctors Understand What’s Going On

This story isn’t from a doctor, but from the patient themselves, since no doctor seems to really understand what they have. Every time they try to explain it, the doctor stares at them in disbelief. Anna_Draconis even explained that looking up the condition on the Internet always provides the wrong results for a different condition altogether. Thankfully, someone in the comments managed to provide them with a different name that they can take to their doctors for better treatment.

“I am someone with a rare disorder, called reflux valve disorder. Basically, it means that the valve between my kidneys and bladder doesn’t close or work properly, so I get kidney infections all the time. So far as I know, there’s no surgery or cure for it, just something internal that was deformed when I was born. It’s always a weird thing to explain to new doctors. Sometimes they point to a chart and say, “You do know you’re talking about this valve here, right?” or they just scrunch up their eyebrows in disbelief until I pee in a jar for them.”


9. Some People Have the Strangest Allergic Reactions

People can be allergic to just about anything. That includes everyday things like latex, wheat, or even water, and sunlight. It takes a lot of time and patience to figure out what a person could be allergic to. Unfortunately for this person, they had to figure things out the hard way until their doctor finally gave them a diagnosis that helped them to manage their condition in the future. According to AngelicaPickles, all it took was to leave one key ingredient out of their future meals.

“A year ago, I developed a pinprick-looking rash all over my torso and limbs. It was really itchy, and the strangest thing was it was shaped like whip marks, so I had to explain that I wasn’t being abused. It took a couple of weeks and several doctors before I was diagnosed with Flagellate shitake mushroom dermatitis, a freaky reaction to raw mushrooms. I was the first case my dermatologist ever saw.” Hopefully this person doesn’t love eating those raw mushrooms, otherwise she will be heartbroken. Better to be sad over a food you have to avoid, though, then going to an early grave over some fungus.


8. A Diagnosis that Could Only be Made When It’s Too Late

Cancer is a horrible, debilitating disease. Thankfully, modern medicine has made it easier for people to deal with it and come out on the other side, fully recovered and healthy. But there are some cancers that are extremely difficult to combat. According to S-Maturin, it’s a cancer called Merkel Cell Carcinoma and involves the sensory nerve cells of the skin. From their story, dealing with this kind of cancer isn’t easy.

“I was involved after the initial excision biopsy and assisted the sentinel node biopsy to check for metastasis. This is where a dye and a radioactive tracer are injected into the tumor. After a short time, a geiger counter is used over the skin to find the lymph node that the tissue in the tumor area drains toward first. It is then excised, being identified in surgery by the dye, and is sent to pathology to see if the tumor has spread to the lymphatic system.” And that must have been the case for this Reddit user. It is too bad to find such a rare disease, but hopefully we all can learn from this experience.


7. Paying Attention In Medical School Really Pays Off

Going through medical school isn’t easy for anyone, no matter how smart you are. You have to take everything into account while working incredibly long hours, and it can put a lot of stress on your body. But because your career is focused on helping people, it can be very rewarding to get things right. IDK_MY_BFF_JILLING went through the whole thing, and when presented with a patient, managed to provide them with a diagnosis and the help they needed to prevent their condition from becoming worse.

“When I was a medical student, I caught a Guillain–Barré syndrome, which is roughly 10-20 per million. He had been admitted to orthopedics with a working diagnosis of spinal stenosis because he was losing the strength in his legs. But being a medical student, I had tons of time to take a really detailed history and discovered that his paralysis was ascending from his feet to ankles to knees. [I] told the ortho team what I thought [and by] the next morning the paralysis had reached his diaphragm, and he was being ventilated in ICU.”


6. The Real Struggle Of A Parent Taking Care Of Their Sick Children

Becoming a parent can be a joyous blessing. However, it can also be a stressful time from the moment you conceive until, well, the end of time. Luckily, doctors do all that they can to make children healthy, but it’s on the parents to take care of those conditions for the rest of their lives. That makes raising children even more stressful than it needs to be, and it doesn’t help when everyone else around you doesn’t believe you or is too selfish to care. For N8theGr8, it’s something a lot more serious than other children not washing their hands.

“Both of my daughters have been diagnosed with FPIES. That’s short for Food protein-induced enterocolitis syndrome. It basically means that they show delayed allergic reactions to something like 90% of food out there. They can’t have dairy, soy, eggs, meat, nuts, wheat, and rice, just to name a few. My wife had to develop a lot of recipes on her own because nothing existed that included the foods that were available to them. Because of this, she may spend up to three hours a day cooking. We have to carry hand wipes with us because she’d end up having a reaction just from playing on things that other kids have played on.”


5. Go in For One Thing for One Patient, Someone Else Gets Diagnosed

Sometimes, you might take a friend or family member to the doctor with you. In most cases, it is your mother. Even so, you have certain expectations when you go to the doctor’s office as to what they might say to you. What you don’t expect is that the doctor will diagnose someone else in the room with you who didn’t come as a patient. It can be a bit alarming and confusing, but doctors don’t usually provide medical advice for free. Thankfully for kasowavd, the doctor’s random diagnosis ended up saving their mother’s life.

“My mom accompanied my sister on a visit to an allergist. The doc walked into the room, looked up from reading the chart, stopped dead in his tracks, and stared at my mother. Seemingly mesmerized, he walked up to my mom. Without asking permission or saying a word, poked a finger into her cheek. ‘You need to get to the ER right now.’ It turns out she had advanced colon cancer. She was bleeding internally and severely anemic,. Plus, her heart was failing, and fluid was backing up. It caused her face to be really pasty and bloated (which he recognized), and when he pressed his finger to her cheek, he saw serious pitting edema.”


4. Trying To Convince A Patient And Her Parents That There’s Nothing Wrong

At some point, when a person believes that they’re sick, it can be difficult for a doctor to convince them otherwise, no matter how much medical information is provided to them. One such condition is called delusional parasitosis, where a person suffers from a psychological disorder where they believe they are infected with parasitic worms or bugs. Providing medication for these parasites can have terrible side effects, and there’s no guarantee the patient will feel “cured” since there’s nothing wrong with them anyway. Unfortunately for Smeeee, they had one such patient come in.

“She actually brought a sample of these worms. She brought them in a glass, covered with saran wrap. I held it up to the light. It looked like saliva with clumps of mucus in it. As I was trying to convince her that it was just normal spit, her parents arrived. Mom and dad were livid with me when I suggested that it was in her head. So I opened up the glass, and with a gloved hand, I pulled out the “worms.” I ran it around in my fingers and showed them. I saw it in dad’s face, and then he turned to his wife and said, “honey, I think we need to talk.” I left the room, and they took her home 15 minutes later.”


3. When Someone Catches The “Forgotten Disease”

It’s one thing to get a rare disease, but it’s something else to contract something called “the forgotten disease,” which means that it’s not diagnosed very often. Unfortunately, if a doctor doesn’t consider this kind of diagnosis, then it could result in the death of the patient. OrdinaryBunbury wasn’t the doctor in this story, but their friend ended up being diagnosed with their rare and horrible condition.

“Someone I was close with in college came down with Lemierre’s Syndrome. He was home for Christmas break and had a sore throat. And he went to the doctor, the doctor said to hydrate, and it should go away. He dealt with it for another day or so. Then he started to get really bad headaches, and was throwing up a lot. Finally, his mom realized that he was throwing up excessively frequently and also there was blood. So she took him to the ER. He was also allergic to penicillin. That turned out to be a good thing because, apparently, that would have made it much worse. Apparently, one of the doctors thought, hey, it might be Lemierre’s Syndrome. And sure enough, when they started treating him for that, he started getting better.”


2. A Doctor Performs Surgery For One Thing And Discovers Something Else

Many surgeons never know what they’re going to find when they perform surgery on someone. Even with the latest in technology, they can end up surprising themselves once all of the layers are peeled back. That’s because medicine and science can be unpredictable, leaving doctors scratching their heads. jacquesrabbit decided to share this story of a surgery that revealed much more about the patient than even they knew.

“A guy came to to the hospital because of abdominal pain. He was diagnosed with an incarcerated hernia and sent to OT for exploratory laparotomy. Then the surgeon went in to see the inguinal anatomy if there is any other anatomical problems/disorders, i.e., torsion incarcerated inguinal hernia. Then, the surgeon could not find the testes. He went right into the scrotum but could not find any testes. So, he finally decided to pull out whatever organ he could find in the scrotum. He pulled out two eggs and a butterfly-shaped organ. They confirmed it: it was a uterus and two ovaries.”


1. A Story of The Body Trying To Destroy Itself

Autoimmune diseases are some of the strangest conditions that people have to deal with on a daily basis. To put it simply, the body’s immune system is basically targeting the other parts of the body, leading to a lot of pain and inflammation that can appear like other allergic reactions. themidnightradio’s girlfriend ended up being diagnosed with an autoimmune disorder, but she had to go through a lot before the doctors figured out what was wrong.

“One day, she noticed some little red dots on her legs, but they didn’t itch and weren’t raised. We figured it was an allergic reaction to her new body wash or something, so we didn’t worry too much. One day, she came home from work early because her legs had swollen up, and she could barely walk. She spends the next four weeks in three different hospitals until dermatologist figures out she has henoch schonlein purpura. That is basically an autoimmune disease where the white blood cells attack the blood vessels, destroying them. Blood was flowing down into her legs and couldn’t return.”