Health issues are basically never pleasant, since many symptoms are shared and it can be pretty hard to understand (or obtain!) solid test results without the help of a doctor. This is, after all, why most people just see medical professionals whenever they feel something is off.
Someone asked “Doctors, what were the wildest self-diagnoses a patient was actually right about?” and people shared their examples. Just remember, it’s still always best to see a doctor first. So get comfortable as you scroll through, upvote your favorites and be sure to share your own experiences below.
#1
Not a doctor, but my aunt and uncle had a Border Collie that would bury his nose in my uncle's back when he was sitting on the couch or recliner. He would walk up, sniff and keep sniffing until my uncle would shoo him away. A bit later he would come back sniff again and just stare at my uncle.
A few weeks later my aunt was watching one of the local news channels and they featured a dog that could smell Parkinson's and she jokingly told my uncle about it. He mentioned their dog constantly sniffing one spot and one spot only on his back so he went to a high school friend who was a doctor in dermatology. He said it didn't look right and did a biopsy on it. Sure enough, he had skin cancer but they caught it early and all he ended up with was a scar on his back.
A few weeks later my aunt was watching one of the local news channels and they featured a dog that could smell Parkinson's and she jokingly told my uncle about it. He mentioned their dog constantly sniffing one spot and one spot only on his back so he went to a high school friend who was a doctor in dermatology. He said it didn't look right and did a biopsy on it. Sure enough, he had skin cancer but they caught it early and all he ended up with was a scar on his back.
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142points
#2
I'm not a doctor, but this is what happened when my son self-diagnosed correctly.
Three years ago he developed a terrible earache and went to urgent care, where they told him he had an ear infection and gave him an antibiotic.
The pain intensified over the next day or so, so he returned and was told he should make an appointment with an ENT, but because it was the weekend, no ENT offices were open, so he had to wait until Monday.
In the meantime, his ear started draining and he saw what looked like spores in the fluid, which would indicate a fungal infection. (He's a naturalist and knows what spores look like.)
The pain grew so intense that he ended up going to the ER. He told the doctor who examined him that he had seen spores in the drainage from his ear and suspected that he had a fungal infection. He later heard the doctor talking to a nurse in the hallway, laughing and saying, "He thinks he saw *spores.*" The doctor prescribed another antibiotic and a steroid.
The next day he flew home to see us for Thanksgiving. I don't know how he managed the flight, because as soon as he got here, he curled up on the floor, howling in pain. I immediately called ENT offices all over town, but most were closed for Thanksgiving week or said they could not see him. Finally one scheduler took pity on him and said she would move things around to get him in.
A PA examined him and confirmed that it was a fungal infection. She told him that the steroid he had been prescribed by the ER doctor was the same agent used in the laboratory to *culture* fungal infections. His infection had started to enter the eardrum and from there could have spread to his brain and killed him. She gave him a prescription that cleared up the infection very quickly.
The wrong diagnoses at urgent care and the ER cost him over $1,500 out of pocket and several days of excruciating pain. The ENT's office did not take his insurance but charged him only $250 for the correct diagnosis.
Three years ago he developed a terrible earache and went to urgent care, where they told him he had an ear infection and gave him an antibiotic.
The pain intensified over the next day or so, so he returned and was told he should make an appointment with an ENT, but because it was the weekend, no ENT offices were open, so he had to wait until Monday.
In the meantime, his ear started draining and he saw what looked like spores in the fluid, which would indicate a fungal infection. (He's a naturalist and knows what spores look like.)
The pain grew so intense that he ended up going to the ER. He told the doctor who examined him that he had seen spores in the drainage from his ear and suspected that he had a fungal infection. He later heard the doctor talking to a nurse in the hallway, laughing and saying, "He thinks he saw *spores.*" The doctor prescribed another antibiotic and a steroid.
The next day he flew home to see us for Thanksgiving. I don't know how he managed the flight, because as soon as he got here, he curled up on the floor, howling in pain. I immediately called ENT offices all over town, but most were closed for Thanksgiving week or said they could not see him. Finally one scheduler took pity on him and said she would move things around to get him in.
A PA examined him and confirmed that it was a fungal infection. She told him that the steroid he had been prescribed by the ER doctor was the same agent used in the laboratory to *culture* fungal infections. His infection had started to enter the eardrum and from there could have spread to his brain and killed him. She gave him a prescription that cleared up the infection very quickly.
The wrong diagnoses at urgent care and the ER cost him over $1,500 out of pocket and several days of excruciating pain. The ENT's office did not take his insurance but charged him only $250 for the correct diagnosis.
108points
#3
Not a doctor, but in junior high I had a little cough that just wouldn’t go away. My grandmother was CONVINCED it was whooping cough. I felt totally fine it was just an annoying cough. She made me go or the doctor and told the doctor that she thought I had whooping cough. The doctor informed her that it hadn’t been in our area in over 10 years so she doubted that was the case. My grandma forced her to test me for it anyway. Turned out I was positive and considered patient 0. The whole school basically ended up getting it and we had to shut down for 2 weeks until it went away.
100points
#4
Patient here, half way though my cancer treatment tell them it's back.
No one but mom listened to me.
After two months of non stop telling them they did a scan.
Turns out yes I had cancer again and look it was getting close to being terminal.
The student doctor learned to listen that day.
No one but mom listened to me.
After two months of non stop telling them they did a scan.
Turns out yes I had cancer again and look it was getting close to being terminal.
The student doctor learned to listen that day.
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97points
#5
Patient here. I was right about having a pituitary microadenoma causing Cushing’s disease. I asked multiple doctors to help me with various symptoms, including a neurologist, and it was missed for years. Finally a wonderful endocrinologist agreed to test my cortisol and it was sky high. 18 months out of surgery and I’ve lost 110 lbs, no longer diabetic, blood pressure is great, no more kidney stones (I had 8), hair has grown back, glaucoma is gone, etc. Most doctors just wanted to diagnose obesity instead of seeing it as a symptom of something else.
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95points
#6
I knew my partner had leukemia about a week before I could convince him to go to the doctor. He was bleeding and bruising really easily and had petechiae. I wanted to go to urgent care where I knew the CBC was done quickly onsite, but he instead wanted to wait to go to his primary.
I took him to his primary and had a bag packed for the hospital in the trunk. The doctor told him it was likely a B-12 deficiency but that he'd do bloodwork to put my mind at ease anyway. I asked if the CBC was done onsite or not, and he said it was sent out. I asked if he planned to rush the CBC. He got very angry and said, "there is nothing the CBC could show that would change my treatment plan." Then he told my partner he needed to stop me from googling.
We got a call that night from the lab that his WBCs were dangerously high and platelets were dangerously low and I had to immediately take him to the ER. I did, and he was diagnosed with acute leukemia.
I took him to his primary and had a bag packed for the hospital in the trunk. The doctor told him it was likely a B-12 deficiency but that he'd do bloodwork to put my mind at ease anyway. I asked if the CBC was done onsite or not, and he said it was sent out. I asked if he planned to rush the CBC. He got very angry and said, "there is nothing the CBC could show that would change my treatment plan." Then he told my partner he needed to stop me from googling.
We got a call that night from the lab that his WBCs were dangerously high and platelets were dangerously low and I had to immediately take him to the ER. I did, and he was diagnosed with acute leukemia.
93points
#7
Patient here. Told my family GP (who I’d seen since I was a kid, and who worked with and saw both my parents as patients for years) that I thought I had reactive hypoglycemia.
He scoffed. “You don’t have that. Why would you think you have that?”
I told him my symptoms. He was doubtful, but told the nurse to get me a Coke and made me chug it. Sent me to roam around the hospital for a little bit, then get bloodwork and come back.
I came back, and his first words were “This is so aggravating.”
“Does…that mean I have it?”
“YES THAT MEANS YOU HAVE IT.”.
He scoffed. “You don’t have that. Why would you think you have that?”
I told him my symptoms. He was doubtful, but told the nurse to get me a Coke and made me chug it. Sent me to roam around the hospital for a little bit, then get bloodwork and come back.
I came back, and his first words were “This is so aggravating.”
“Does…that mean I have it?”
“YES THAT MEANS YOU HAVE IT.”.
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83points
#8
When I was pregnant, I was hospitalized overnight due to one of my routine labs being abnormal. Along with high blood pressure, my liver enzymes were extremely high but everything else came back normal. I spent the night googling my labs and symptoms and asked my nurse if it could be HELLP Syndrome, which is a very rare form of preeclampsia that can cause your liver to bleed and can kill both you and your baby if let go for too long. The only cure/treatment is to deliver. She literally laughed at me and said there was no way I had it, because I would’ve been in more pain.
2 weeks later I had an emergency induction due to HELLP Syndrome. Thankfully we are both okay, but I will never get over her being so flippant about something that easily could’ve killed us.
2 weeks later I had an emergency induction due to HELLP Syndrome. Thankfully we are both okay, but I will never get over her being so flippant about something that easily could’ve killed us.
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79points
#9
Patient.
Found a lump in my neck. Saw doctor #1. She said allergies. Sent me home with antibiotics.
Found second lump in neck. Saw doctor #2. Allergies. Don’t stress. All bloodwork is fine. Different antibiotics.
Antibiotics didn’t help. Saw doctor #3. He was a little more suspicious but because I was a young 19yo he said I was fine and to try a different antibiotic.
Went onto WebMD that night…. Few days later saw doctor #4. Said I know this is cancer. Please do more tests.
Sure as s**t. Stage 3 papillary and follicular thyroid cancer. Had major neck surgery 3 weeks later where they removed my thyroid, 2 parathyroids and 24 cancerous lymph nodes from my neck and chest. Have a 9 inch scar up to my ear.
14 years cancer free since October 6th.
Found a lump in my neck. Saw doctor #1. She said allergies. Sent me home with antibiotics.
Found second lump in neck. Saw doctor #2. Allergies. Don’t stress. All bloodwork is fine. Different antibiotics.
Antibiotics didn’t help. Saw doctor #3. He was a little more suspicious but because I was a young 19yo he said I was fine and to try a different antibiotic.
Went onto WebMD that night…. Few days later saw doctor #4. Said I know this is cancer. Please do more tests.
Sure as s**t. Stage 3 papillary and follicular thyroid cancer. Had major neck surgery 3 weeks later where they removed my thyroid, 2 parathyroids and 24 cancerous lymph nodes from my neck and chest. Have a 9 inch scar up to my ear.
14 years cancer free since October 6th.
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78points
#10
I work as a medical lab tech. We had a patient who came in insisting that her neighbor was poisoning her. Everyone dismissed her assuming she has some kind of paranoid psychosis. She remained in the ER on a psych eval. I ran all the standard labs on her and they were normal but this patient would not budge. She was admitted to psych on a hold. At this point, one of the hospitalist decided ‘why not’ and ordered labs to test for several heavy metals and ethylene glycol. Her ethylene glycol level was 32. THIRTY TWO.
Idk if she was legit being poisoned by her neighbor or if it was self induced, but damn, that patient taught me a very important lesson that day.
Idk if she was legit being poisoned by her neighbor or if it was self induced, but damn, that patient taught me a very important lesson that day.
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74points
#11
One of my dearest friends from middle school was suffering from absolutely devastating medical issues. She went from bright and thriving in university to having to drop out before she graduated because her health bottomed out. She lost her job that paid her a fantastic amount... basically her entire life fell apart.
She was telling me about the new weird thing happening with her: some strange anemia that was found to be the result of abnormally low ferritin in her blood, which is what enables your red blood cells to carry iron. That was when something clicked in my brain: horrible digestive issues, peculiar anemia, chronic infections in her spleen that required a splenectomy, would sunburn to a blistering point in less than a half-hour, a diagnosed "allergy" to sulfa d***s, horrible reactions to carbamazepine, retinol gave her a suppurating skin rash.
I'm a premed dropout and one of the first classes I took on my path to premed was an undergrad course in rare conditions and diseases. And one of the ones we discussed in our inherited disorders segment of class was porphyria. There's an easy way to tell if someone has porphyria: have them pee into a clear plastic or glass cup and expose it to direct sunlight. In a period of hours to days, the urine of people with porphyria will turn from clear or yellow to a wine red or wine purple. So I asked her if she trusted me enough to do something weird, told her to get a clear plastic disposable cup from her kitchen, pee in it, and put it in her windowsill where nobody could see it. And if anything about it changed, come tell me.
Approximately four hours later, she called me on the phone screaming that her "p**s turned f*****g purple-red like a goddamn vampire" and I told her she needed to go to the doctor and get tested for porphyria.
2 weeks later she tagged me on Facebook calling me "Lesbian Doctor House" because she was diagnosed with congenital erythropoietic porphyria!
EDIT: For everyone saying I "stole" this from "Scrubs" - I didn't even know "Scrubs" had a porphyria episode so I looked it up and it came out a full year *after* this happened :) Also watching "Scrubs" and giving someone a Dx doesn't cost you $100,000 that you end up having to pay back for 20 years 😭.
She was telling me about the new weird thing happening with her: some strange anemia that was found to be the result of abnormally low ferritin in her blood, which is what enables your red blood cells to carry iron. That was when something clicked in my brain: horrible digestive issues, peculiar anemia, chronic infections in her spleen that required a splenectomy, would sunburn to a blistering point in less than a half-hour, a diagnosed "allergy" to sulfa d***s, horrible reactions to carbamazepine, retinol gave her a suppurating skin rash.
I'm a premed dropout and one of the first classes I took on my path to premed was an undergrad course in rare conditions and diseases. And one of the ones we discussed in our inherited disorders segment of class was porphyria. There's an easy way to tell if someone has porphyria: have them pee into a clear plastic or glass cup and expose it to direct sunlight. In a period of hours to days, the urine of people with porphyria will turn from clear or yellow to a wine red or wine purple. So I asked her if she trusted me enough to do something weird, told her to get a clear plastic disposable cup from her kitchen, pee in it, and put it in her windowsill where nobody could see it. And if anything about it changed, come tell me.
Approximately four hours later, she called me on the phone screaming that her "p**s turned f*****g purple-red like a goddamn vampire" and I told her she needed to go to the doctor and get tested for porphyria.
2 weeks later she tagged me on Facebook calling me "Lesbian Doctor House" because she was diagnosed with congenital erythropoietic porphyria!
EDIT: For everyone saying I "stole" this from "Scrubs" - I didn't even know "Scrubs" had a porphyria episode so I looked it up and it came out a full year *after* this happened :) Also watching "Scrubs" and giving someone a Dx doesn't cost you $100,000 that you end up having to pay back for 20 years 😭.
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71points
#12
Not a doctor, and I don’t play one on TV but nearly became a doctor half a lifetime ago.
I diagnosed my husband’s brain tumor, leading to emergency surgery.
A month in and out of the ER - personality change, couldn’t stay awake, diagnosed with a “B12 deficiency”, “dehydration”, frequent vomiting, vision looked “weird” but he could never explain it (turns out his peripheral vision was gone), and a “swollen optic nerve - probably just high BP” from ophthalmology. After a weekend where I could barely wake him up, he went back to the ER where he waited four hours in the waiting room. I asked him if anyone had done a CT or MRI of his brain, just throwing c**p at the wall to see if anything stuck, and I assumed they had - they had not. Told him to insist on a CT, because I had a wild sneaking suspicion.
Two hours after being called back he was in an ambulance on his way to a different hospital with a neuro ICU to get scheduled for emergency brain surgery. Massive tumor with dangerous obstructive hydrocephalus.
I diagnosed my husband’s brain tumor, leading to emergency surgery.
A month in and out of the ER - personality change, couldn’t stay awake, diagnosed with a “B12 deficiency”, “dehydration”, frequent vomiting, vision looked “weird” but he could never explain it (turns out his peripheral vision was gone), and a “swollen optic nerve - probably just high BP” from ophthalmology. After a weekend where I could barely wake him up, he went back to the ER where he waited four hours in the waiting room. I asked him if anyone had done a CT or MRI of his brain, just throwing c**p at the wall to see if anything stuck, and I assumed they had - they had not. Told him to insist on a CT, because I had a wild sneaking suspicion.
Two hours after being called back he was in an ambulance on his way to a different hospital with a neuro ICU to get scheduled for emergency brain surgery. Massive tumor with dangerous obstructive hydrocephalus.
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71points
#13
I’m a patient. I had a super painful skin infection on my face and neck that my dermatologist insisted was just an eczema flare up. She prescribed topical steroids. They help in the short term, but I continued having painful rashes on my face. ETA: I asked if it could be a fungal rash, but the derm said she was sure it was eczema. Unfortunately, steroids weaken your immune system, thin your skin, and facilitate spreading of any infection.
A few months later, my hands and fingernails get really painful. Life was hard because I was in pain when I tried to do normal things like write, type, open things, etc. Eventually, I started getting bleeding blisters on my hands and my actual nails turned yellow. I see the dermatologist because at this point I realize topical antifungals give me some relief, but I’d need oral antifungals to treat the actual nails.
The dermatologist swore this was eczema dishydrosis. I asked for a culture to be taken, and she took a swab (NOT A NAIL CLIPPING which is needed to diagnose fungal infections of the nails). So the diagnostic test of course came back negative. She prescribed steroids again, but I was hesitant to use them because at this point, I did not trust my dermatologist one bit.
I see my PCP and tell him what’s up. He agrees to try oral terbinafine, and it f*****g worked. My nails fell out and grew back in, and the infection cleared up. The rashes on my face cleared up too. I was on the antifungal for 7 months. I had a follow up with the dermatologist and showed her how the antifungals actually worked and to show her SHE WAS WRONG.
A few months later, my hands and fingernails get really painful. Life was hard because I was in pain when I tried to do normal things like write, type, open things, etc. Eventually, I started getting bleeding blisters on my hands and my actual nails turned yellow. I see the dermatologist because at this point I realize topical antifungals give me some relief, but I’d need oral antifungals to treat the actual nails.
The dermatologist swore this was eczema dishydrosis. I asked for a culture to be taken, and she took a swab (NOT A NAIL CLIPPING which is needed to diagnose fungal infections of the nails). So the diagnostic test of course came back negative. She prescribed steroids again, but I was hesitant to use them because at this point, I did not trust my dermatologist one bit.
I see my PCP and tell him what’s up. He agrees to try oral terbinafine, and it f*****g worked. My nails fell out and grew back in, and the infection cleared up. The rashes on my face cleared up too. I was on the antifungal for 7 months. I had a follow up with the dermatologist and showed her how the antifungals actually worked and to show her SHE WAS WRONG.
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70points
#14
Had a patient who came into the ED with vague mild abdominal pain whose friend recently died of colon cancer. She was convinced she must have it too. Told her cancer wasn't contagious like that, but ordered a CT scan because she was so insistent in order to reassure her. Low and behold, she had a huge colon mass. Very bizarre case.
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69points
#15
Woman in her 40s came in and told me she was having seizures.
I asked how she knew and she said her right hand would periodically stiffen. There was no loss of consciousness or other symptoms more associated with classic seizures, but I ordered tests anyway.
Turns out she had been having multiple focal seizures.
I asked how she knew and she said her right hand would periodically stiffen. There was no loss of consciousness or other symptoms more associated with classic seizures, but I ordered tests anyway.
Turns out she had been having multiple focal seizures.
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68points
#16
EM/ICU doc here with over 10yrs of experience.
While it's not quite a diagnosis, experience has taught me to take very seriously when a patient states he's about to die, even if he appears in a stable/controlled condition.
Patients who have a life-threatening condition usually have a premonition about their imminent decompensation, which is usually preceded by very subtle signs of worsening that may be confounded with pretty much anything that happens on a resuscitation room or on the back of an ambulance.
I've had patients who appeared to be in a completely stable condition, with acute conditions where cardiac arrest was not foreseeable (example: motorcycle accident with single limb injury), who briefly mentioned they think they are about to die before suddenly entering in cardiac arrest due to a malignant arrhythmia.
It's believed that patients may perceive a sudden drop of blood pressure and/or the usual release and spike of adrenaline and other catecholamines as "imminent death", but the reason why this happens is not clear. Some we are able to return, others we lose, or "recover" them to a state where death would be better.
While it's not quite a diagnosis, experience has taught me to take very seriously when a patient states he's about to die, even if he appears in a stable/controlled condition.
Patients who have a life-threatening condition usually have a premonition about their imminent decompensation, which is usually preceded by very subtle signs of worsening that may be confounded with pretty much anything that happens on a resuscitation room or on the back of an ambulance.
I've had patients who appeared to be in a completely stable condition, with acute conditions where cardiac arrest was not foreseeable (example: motorcycle accident with single limb injury), who briefly mentioned they think they are about to die before suddenly entering in cardiac arrest due to a malignant arrhythmia.
It's believed that patients may perceive a sudden drop of blood pressure and/or the usual release and spike of adrenaline and other catecholamines as "imminent death", but the reason why this happens is not clear. Some we are able to return, others we lose, or "recover" them to a state where death would be better.
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64points
#17
Not a doctor, but a patient.
I got mono at 16. It didn’t leave. I was getting recurrences twice a year where my lymph nodes would swell and I would get sick just like the first time, my blood tests showing glaring red positives for mono markers.
I got my tonsils out in my 20’s and the mono seemed to subside.
Two years later I got all the same symptoms. Swollen lymph nodes, fatigue, all the rest. I went to the urgent care. The PA took one look at the bumps under my arms and prescribed me antibiotic cream for ingrown hair. I told him about the mono - he rolled his eyes and told me they were infected ingrown hairs. I insisted on a blood test, even if I had to pay out of pocket.
Blood tests came back and not only was I positive for mono, the markers were 19 TIMES the normal numbers for a positive case.
This thread made me remember that story. Haven’t thought about it in a while.
I got mono at 16. It didn’t leave. I was getting recurrences twice a year where my lymph nodes would swell and I would get sick just like the first time, my blood tests showing glaring red positives for mono markers.
I got my tonsils out in my 20’s and the mono seemed to subside.
Two years later I got all the same symptoms. Swollen lymph nodes, fatigue, all the rest. I went to the urgent care. The PA took one look at the bumps under my arms and prescribed me antibiotic cream for ingrown hair. I told him about the mono - he rolled his eyes and told me they were infected ingrown hairs. I insisted on a blood test, even if I had to pay out of pocket.
Blood tests came back and not only was I positive for mono, the markers were 19 TIMES the normal numbers for a positive case.
This thread made me remember that story. Haven’t thought about it in a while.
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63points
#18
Patient here.
My story is just... A long and dumb story.
I kept getting migraines more and more often. I started getting nose bleeds and blacking out at the gym. Then one day after the gym the migraine never stopped, so I went to my doctor, who gave me a Toradol shot. That didn't work, so he sent me to the ER.
ER: Its sinusitis go buy a humidifier (I did)
The migraine didn't go away, and I could hear my heartbeat too, so I made an appointment with an ENT. They ordered an MRI - and when they saw the results told me to see a neuro ASAP. They couldn't help me see one, couldn't write a referral or anything. But I needed one as soon as humanly possible.
So I called my GP. They sent referrals to every neuro in my area. I called 13 offices, made 13 appointments, and got put on 13 wait lists. I saw a neuro 2 days later. (then called the other 12 back to cancel).
Neuro was like, the MRI shows signs you might have too much cerebral spinal fluid in your brain, but MRIs don't actually see csf, so all we can see is the side effects, thinning of the bone from the pressure wearing away at it. Your pituitary gland is flattened, etc. We need to do an MRV and lumbar puncture to see what's actually happening with the cerebral spinal fluid.
So we do that, and the pressure in my head is 40 when it should be 5-15. Cool.
She puts me on meds to lower my csf production. OK.
The pain does not change. She doesn't know why.
So, this neuro, because I was just trying to see ANY NEURO was a sleep specialist. I decided to change to a headache specialist for more specialized care.
He changes the types of meds I'm on, but the pain basically is still agony.
I ask him 'hey, so, I read birth control can trigger this. Should I take my IUD out?'
He's like 'no. You should leave it in. It's stabilizing your hormones so your periods don't make things worse.'
I listen to him for a few months, then say f**k it and have it removed. The pain dropped significantly within three days of removal.
Then I'm like, wtf. My ability to think clearly is not great, but I pull up my MRI and MRV reports and start reading them and doing research on what it all means.
Transverse sinus stenosis. A cerebral spinal fluid vein was collapsed inside my head.
So I went to my neuro and was like 'hey, isn't this important? Shouldn't we have to fix this?'
Neuro: no. Ignore that.
So then I went to see a neuro ophthalmologist.
He was like : your eyes are fine so your brain is fine. What your feeling is migraine. The meds are working. Go back to neuro.
I was like, wtf.
So I went to a DIFFERENT neuro.
Me: 'I want a stent.'
Neuro :??? (looks up things on computer) oh. You do have a stenosis. I'm not really a vein doctor. You need a stroke specialist. Let me refer you.
Stroke specialist: MRVs suck at showing you how bad a stenosis is. You need a neurosurgeon to go in there and take a look at it.
Neurosurgeon : yeah. Let's go take a look.
So, the neurosurgeon did an angiogram (exploratory surgery) and saw that the pressure in my head was STILL 40 after two years on the highest dosage of pressure lowering medication, and I qualified for a stent to fix the vein.
I was right. The pile of my previous doctors were wrong. I had to keep changing doctors and believe that the vein was the issues, and all my doctors were idiots until I finally got help.
There's more dumb stuff that happened over last 5 years, but that's the major stuff.
My story is just... A long and dumb story.
I kept getting migraines more and more often. I started getting nose bleeds and blacking out at the gym. Then one day after the gym the migraine never stopped, so I went to my doctor, who gave me a Toradol shot. That didn't work, so he sent me to the ER.
ER: Its sinusitis go buy a humidifier (I did)
The migraine didn't go away, and I could hear my heartbeat too, so I made an appointment with an ENT. They ordered an MRI - and when they saw the results told me to see a neuro ASAP. They couldn't help me see one, couldn't write a referral or anything. But I needed one as soon as humanly possible.
So I called my GP. They sent referrals to every neuro in my area. I called 13 offices, made 13 appointments, and got put on 13 wait lists. I saw a neuro 2 days later. (then called the other 12 back to cancel).
Neuro was like, the MRI shows signs you might have too much cerebral spinal fluid in your brain, but MRIs don't actually see csf, so all we can see is the side effects, thinning of the bone from the pressure wearing away at it. Your pituitary gland is flattened, etc. We need to do an MRV and lumbar puncture to see what's actually happening with the cerebral spinal fluid.
So we do that, and the pressure in my head is 40 when it should be 5-15. Cool.
She puts me on meds to lower my csf production. OK.
The pain does not change. She doesn't know why.
So, this neuro, because I was just trying to see ANY NEURO was a sleep specialist. I decided to change to a headache specialist for more specialized care.
He changes the types of meds I'm on, but the pain basically is still agony.
I ask him 'hey, so, I read birth control can trigger this. Should I take my IUD out?'
He's like 'no. You should leave it in. It's stabilizing your hormones so your periods don't make things worse.'
I listen to him for a few months, then say f**k it and have it removed. The pain dropped significantly within three days of removal.
Then I'm like, wtf. My ability to think clearly is not great, but I pull up my MRI and MRV reports and start reading them and doing research on what it all means.
Transverse sinus stenosis. A cerebral spinal fluid vein was collapsed inside my head.
So I went to my neuro and was like 'hey, isn't this important? Shouldn't we have to fix this?'
Neuro: no. Ignore that.
So then I went to see a neuro ophthalmologist.
He was like : your eyes are fine so your brain is fine. What your feeling is migraine. The meds are working. Go back to neuro.
I was like, wtf.
So I went to a DIFFERENT neuro.
Me: 'I want a stent.'
Neuro :??? (looks up things on computer) oh. You do have a stenosis. I'm not really a vein doctor. You need a stroke specialist. Let me refer you.
Stroke specialist: MRVs suck at showing you how bad a stenosis is. You need a neurosurgeon to go in there and take a look at it.
Neurosurgeon : yeah. Let's go take a look.
So, the neurosurgeon did an angiogram (exploratory surgery) and saw that the pressure in my head was STILL 40 after two years on the highest dosage of pressure lowering medication, and I qualified for a stent to fix the vein.
I was right. The pile of my previous doctors were wrong. I had to keep changing doctors and believe that the vein was the issues, and all my doctors were idiots until I finally got help.
There's more dumb stuff that happened over last 5 years, but that's the major stuff.
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62points
#19
I’m a nurse, but just had a patient who came in for a colonoscopy due to constipation and pain with bowel movements. He told me prior to the test he felt like there was something “catching” on the left side of his abdomen when he pooped and was like “maybe I have a big polyp there or something.” Sure enough, he ended up having a 2.5 cm polyp that we removed from that exact area. I’ll never get to find out if that catching sensation ever went away for him, but I thought it was interesting that he was right.
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60points
#20
Me: Dr I have a Kidney stone
DR: no blood in urine, can't see anything on ultrasound
3 days later
Me: My stone is causing me pain and cold sweating
DR: Let's talk about an x-ray of your spine
DR: There is a slight misalignment. Could be trapped nurve, Referred to Spinal surgeon.
2 days later
Me: taking a p**s, wtf was that
Me: Dr, here is the 4mm stone.
DR: no blood in urine, can't see anything on ultrasound
3 days later
Me: My stone is causing me pain and cold sweating
DR: Let's talk about an x-ray of your spine
DR: There is a slight misalignment. Could be trapped nurve, Referred to Spinal surgeon.
2 days later
Me: taking a p**s, wtf was that
Me: Dr, here is the 4mm stone.
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57points