People Who Were Initially Misdiagnosed Explain How Doctors Figured It Out

Content Warning: Various Medical Conditions and Symptoms, Diagnoses, Testing, Misdiagnoses, and Cancer

Anyone who has ever sought out a medical diagnosis for an unknown ailment can attest to how emotionally, mentally, and physically exhausting it can be to complete test after test in the hopes of getting answers.

But what is even more perplexing is when you think you have your answer, but the symptoms keep coming.

Curious, Redditor Pharmer-Mo asked:

"What were you misdiagnosed with? What ended up being the right diagnosis?"

Gastrointestinal Issues

"My now 10-year-old daughter was diagnosed with various explanations to vague gastrointestinal symptoms experienced over her entire life: constipation, anxiety, GERD, cyclical vomiting syndrome, gastroparesis."

"All shots in the dark in an attempt to explain and treat, but none really fit. She was emaciated, failed to thrive, and was in talks for a feeding tube. Multiple scopes, pokes, and scans by specialists in multiple states over several years, and there were no answers."

"We would have continued down the GI path if it hadn't been for an episode of sleep apnea that I witnessed her having. I told her pediatrician that, in addition to all of the other issues, that I now suspected her to have sleep apnea."

"To his credit, he directed us straight to an ENT, who evaluated her, but she had no physical explanations to cause apnea. She underwent a sleep study, which confirmed several CENTRAL sleep apnea issues (her brain didn't tell her body to breathe when she slept."

"That got her into an MRI, and the day after her ninth birthday, we discovered the root cause was not, in fact, any of the previous diagnoses or attempts to help her, but actually a brain tumor."

"Brain cancer."

"She underwent immediate surgery, which removed about forty percent of the egg-sized tumor and is currently in a clinical chemotherapy study. She has since gained 30 pounds and grown five inches in height."

- Mediocre-Ad332

The Power Of Deficiency

"I was diagnosed with something like 10 different disorders."

"It turned out to be iron deficiency."

"That s**t affects EVERYTHING."

- 314159265358979326

Tragically Not Gonorrhea

"My late partner was incorrectly diagnosed with gonorrhea (despite no history or indication and a negative test) at the ER."

"He died 55 days later of metastatic cancer."

"He had severe back and chest pain with systemic swelling including his testes. For some reason, the ER doc hyper-focused on that. He was admitted a week later to another hospital with Mets to his spine and found the primary cancer to be esophageal. He was military and had chemical burn pit exposure which was likely the source of the cancer."

- chaoswarlock1

Anxiety And Depression

"I was diagnosed with depression and anxiety. I repeatedly became unresponsive to antidepressants after initial success. Turns out I have Bipolar II and was experiencing months-long depressive and manic states."

"I went on a mood stabilizer three years ago and have had no manic or depressive episodes for about three years now after oscillating back and forth for almost a decade. My mental health and quality of life have improved tremendously."

- AwesomeOrca

"Just Depression"

"I was diagnosed with 'just depression' but actually have Hashimoto's Thyroiditis. I'm still mad about it, too, even 20 years later."

- donac

"Fibromyalgia, depression, and anxiety for me. Hashimoto's really does affect EVERYTHING."

- riroyalle

"Same! My doctor thought that because I kept complaining that I was so tired all the time, worked a stressful job, and because my blood work was 'fine,' I must have been depressed. I was put on Prozac, which caused random bruising all over my body and one of my pupils to dilate (I felt no different otherwise)."

"I had to get an MRI of my head to make sure I didn’t have a bleed somewhere. Only years later, did I have more extensive blood work done plus a thyroid ultrasound which confirmed I have Hashimoto’s."

- madicoolcat

Lazy And Unmotivated

"I was diagnosed with anxiety and being lazy and unmotivated as a preteen. At age 38, my new Primary Care doctor asked if I'd ever been evaluated for ADHD."

"After answering a few questions, he prescribed a low dose of Adderall. It was like the clouds parting and the sun coming out."

"The prospect of starting a big project doesn't make me want to cry anymore. I'm not constantly anxious about whatever it was I was supposed to remember."

- ca77wumpus

Just Whining

"Being an overly sensitive whiny woman. It was actually a dislocated wrist."

- MinuteMaidMarian

"I was also diagnosed as being an overly sensitive whiny woman!"

"Mine turned out to be deep infiltrating endometriosis that had fused my uterus and ovaries to literally everything in my abdominal cavity and was causing me to drag my leg like a zombie."

- Wankeritis

Attention-Seeking Behavior

"The doctor told my grandma I should see a psychiatrist to address my 'attention-seeking behaviors' after I dislocated my knee and was not given appropriate treatment."

"Turns out, I have Ehlers-Danlos Syndrome."

- BurrSugar

"I literally had to stay three days at a psych hospital when I was 16 because a doctor thought I was 'attention seeking' and 'faking injuries.'"

"As soon as the psychiatrist spoke to me, he recognized that I didn't need to be there. His exact words were, 'You shouldn't even be here. You're fine mentally. It's obvious that you have real medical issues and aren't getting proper treatment. But by law, we have to monitor you for three days. So just spend that time watching TV or something in the sitting room. This place can be boring, but some of the nurses have cards. If you want to play solitaire, gin rummy, or go fish they'll probably let you borrow them.'"

"It was a boring three days, but at least it didn't last long. I spent most of the time watching basic cable TV, playing Solitaire, and playing Gin Rummy with the nurses. So it was pretty uneventful."

"Anyway, long story short, it turns out that I actually have Ehlers-Danlos Syndrome, POTS, and MCAD."

"Unfortunately, it took years for doctors to figure it out. Now I have everything documented and officially diagnosed. So at least they finally take my medical issues seriously."

- Repossessedbatmobile

A Pierced Bellybutton

"They said I had a pierced bellybutton. No, really."

"Except it was actually a very rare form of endometriosis… umbilical endometriosis."

"The doctors accused me four times of piercing my belly and lying about it. They even made my mother leave the room to try to convince me it was safe to tell them."

"I was literally pleading with them to listen to me that I’m not a moron, I have PROFESSIONAL piercings, so why the f**k would I lie about a bellybutton piercing? I also was covered in professional tattoos at the time… don’t see why a 24-year-old woman would be lying about that."

"They were all very young male doctors, and they acted like frantic teenagers; it was so infuriating."

"They sent me away with a piece of paper saying 'Patient denies piercing bellybutton.' It p**sed me off so much because I could barely move, it was a whole chore even getting to the hospital because there was so much pressure behind my belly button, and blood was oozing out of it."

"It took three more doctors to get help. The third woman I saw, bless her, truely, she immediately believed me, she was the most lovely accepting helpful doctor I’ve ever had in my life."

"She immediately referred me to the specialists I’d been begging to be referred to for years and then helped me with my other health issues immediately with no issues. Also, for every diagnosis I said I had that other doctor had accused me of lying about, she tested and said I was right."

- miaowzi

First-Time Mom Problems

"I called repeatedly for a persistent fever and eventually difficulty breathing after I had my son via emergency c-section. The midwife told me regarding my difficulty breathing that I probably was having anxiety and regarding the fever, my milk was coming in."

"Turns out I had a massive infection that had me on multiple antibiotics and pretty close to going to the ER, which would have left me alone without my baby due to the pandemic. Urgent Care refused to treat me and threatened to call an ambulance. Why not just have me come in the office for a quick check before it got this bad?"

- sunbeans468

"They really want nothing to do with you after the baby is born. I had difficulty breathing a week after my c-section and went to labor and delivery triage because that’s where they told me to go if I had postpartum preeclampsia symptoms."

"L&D didn’t even want to look at me because it didn’t sound like preeclampsia. Went to the ER, and they were confused because they thought anyone freshly postpartum went to L&D."

"Way too much time was spent by them arguing who was supposed to treat me."

- Ekyou

Tuberculosis

"I was having chest pains and went to the ER. The pain was right where my heart is, so they first thought I was having a heart attack."

"After clearing a heart attack, they took my list of symptoms and the fact that I work in public education and misdiagnosed me with Tuberculosis."

"My wife had to put on a full-body suit to visit me in the hospital. I was in an isolation chamber with an airlock room for entry for two weeks before they cleared me of TB and moved me to a regular room."

"It turned out to be Valley Fever and Pneumonia eating at my lung."

- GamingSanctum

Failed Root Canal

"Not me but my wife, and this was just last year: Out of nowhere, she started having excruciating pain in her mouth around the area where she had a root canal done years ago, so she went to an emergency dentist."

"They took X-Rays and diagnosed it as a failed root canal and gave her meds to deal with the pain until it could be redone by them. Then they proceeded to give her the runaround on actually scheduling the appointment to have it done."

"First, she shows up for the appointment they scheduled, only for it to be the doctor’s planned day off. Then when she tried to reschedule, they told her they didn’t have an appointment for another two months."

"She said 'screw it' and went somewhere else to get a second opinion. The doctor took one look at the X-Ray and one look in her mouth and saw a giant crack down the middle of one of her molars, and questioned how the other place missed something so obvious. They removed the tooth, and she’s been pain-free since."

"She tried to get at least some money back from the first dentist because they f**ked up so badly, and for them to drop the bill, too. They kept saying no until my mother-in-law got involved and basically told them that if they didn’t drop it, they were getting reported to the licensing board for gross misconduct. That got them to back down."

"In conclusion: F**k Aspen Dental. Avoid them at all costs. They are f**king awful."

- KarateKid917

Bipolar Disorder

"I was misdiagnosed with Bipolar disorder at age 7 and was medicated for it until I was 23."

"I got a psych eval when I was 17 and it said I am on the spectrum and have super high anxiety but show no signs of having bipolar disorder."

"I was still heavily medicated for Bipolar disorder for another six years and had doctors tell me it was my fault the meds weren’t working and I was called a liar more times than I can count."

"I’m 29 now and a lot of the Bipolar meds I was on as a kid and through puberty are no longer given to children because of how strong they are and the risks of long-term side effects."

"My metabolism is also fucked up and I have serious trust issues with doctors, but I’m working on it and after years of taking fistfuls of unnecessary antipsychotics, mood stabilizers, antidepressants, and more I only need to take one prescription sleep aid."

- Moopoo878

Depression

"My depression turned out to be narcolepsy."

- ItsYaEarl

"Same. I took antidepressants for years with no help. My doctor told me that it wasn't working because I needed therapy. I switched docs and on the first visit, he ordered me a sleep test."

"I've had it my whole life, I think. It took until 30 years old to be correctly diagnosed. Narcolepsy sucks."

- foreveramoore

Just The Basics

"Oh dear. If you're a woman, it could be anything. The misdiagnosis will be depression, anxiety, or otherwise 'all in your head!' The actual diagnosis could be anything."

- craftasaurus

"Or you 'just need to lose weight.'"

- mountainmamapajama

"Oh, but have you tried yoga?"

- Quick3rickson

"I went in with a broken toe once, and they told me I just needed to drink more water."

"I also went in with a 180 beats-per-minute resting heart rate and difficulty swallowing/breathing and was told it was because I have anxiety, and do go home. Turns out, it was an autoimmune issue. Yaaaaay!"

- kinfloppers

It's alarming what a patient might be told in the examination room, only for them to endure symptoms and inappropriate treatments indefinitely. Fortunately, these Redditors have received their diagnoses, but countless others have not.