Have you or anyone you know been diagnosed with something you've never heard of before?

Pawpaw42

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I was diagnosed with something called charcot foot, never heard of it and can't find anyone else that's ever had it. Thought I was having a gout attack in my ankle but further xrays revealed I had many crushed bones. The diabetes done creeped up on me and couldn't feel the pain it was actually causing. This sucks.
 
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Tinker Dan

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<------------- Stevens-Johnson...... I got very lucky, the Drs. Caught it very early. Could have been REALLY bad.
 

Pawpaw42

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I'm 6'2", 215, been in a cast and now walking boot since December. Been back to work since April as doc says I've done everything he's told me to do. Just being very careful as I don't want any more problems.
 

80 Proof

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<------------- Stevens-Johnson...... I got very lucky, the Drs. Caught it very early. Could have been REALLY bad.
My mom has that, came to this thread to post about it. Didn't think she was going to make it for a while, spent several weeks in the hospital, even some time in the burn unit. Pretty nasty syndrome.
 

Strokin_Bandit

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My mother was diagnosed with ovarian cancer, fought it into what we thought was remission, then developed something called paraneoplastic syndrome. I wouldn't wish that on any of my worst enemies.
 

Pawpaw42

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Was just curious if anyone had much luck going forward, they say I'm lucky because my bones healed on top.
 

Tinker Dan

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My mom has that, came to this thread to post about it. Didn't think she was going to make it for a while, spent several weeks in the hospital, even some time in the burn unit. Pretty nasty syndrome.

I was in the ER for about 18 hours. They had a bunch of doctors trying to figure it out. One luckily knew about it. None had seen it. At least that is what they told me.


I did not get it near as severe as most. But it sucked. I have seen pictures and read horror stories. They told me I was facing a long road in the burn center. But luckily I avoided that.
 

Pawpaw42

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Terrible, glad you got through it, it's really frightening hearing something that you have and hand no idea on how to deal with it at first
 

80 Proof

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I was in the ER for about 18 hours. They had a bunch of doctors trying to figure it out. One luckily knew about it. None had seen it. At least that is what they told me.


I did not get it near as severe as most. But it sucked. I have seen pictures and read horror stories. They told me I was facing a long road in the burn center. But luckily I avoided that.
My mom was discharged at first as they thought it was something else. By the time she went back in she was getting pretty bad.

Worst feeling in the world seeing your mom in terrible pain, not knowing if she would make it, and there being nothing you could do about the situation. That was several years ago and she's doing much better now, but she's had long term effects that are just part of life now.
 

UKGrad93

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I didn't know the patient, but had a conversation with a radiation oncologist and medical physicist about treating a guy with penile cancer (dick cancer).
 

slick rick.ksr

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I had epidoomaglotis once. Took me weeks to get over the worst of it, but with holistic healing I'm back to about 60% mental capacity
 

UKGrad93

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My mother was diagnosed with ovarian cancer, fought it into what we thought was remission, then developed something called paraneoplastic syndrome. I wouldn't wish that on any of my worst enemies.
Your enemies must be nice. I hate my enemies and would wish paraneoplastic syndrome, dick cancer, and a host of other diseases and afflictions on them. I wish incurable pain and suffering on my enemies. F*** my enemies.
 
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CatsFanGG24

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My mom was discharged at first as they thought it was something else. By the time she went back in she was getting pretty bad.

Worst feeling in the world seeing your mom in terrible pain, not knowing if she would make it, and there being nothing you could do about the situation. That was several years ago and she's doing much better now, but she's had long term effects that are just part of life now.
Friend had the same thing. Went to ER a few times and was released...had pneumonia as well during all this, possible the meds for that led to SJ.

Now dealing with blood clots but that's nothing compared to what it was. Visited him while he was looking bad - red eyes, dry blistered lips etc...only tough people get through that stuff.
 
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I was in the ER for about 18 hours. They had a bunch of doctors trying to figure it out. One luckily knew about it. None had seen it. At least that is what they told me.


I did not get it near as severe as most. But it sucked. I have seen pictures and read horror stories. They told me I was facing a long road in the burn center. But luckily I avoided that.

"One luckily knew about it?" That's scary and sounds like a ****** hospital/ER. SJS is well-known in the medical field because it IS so serious, and is not usually difficult to diagnose. Sounds like that situation could have turned out much worse.
 

UKserialkiller

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"One luckily knew about it?" That's scary and sounds like a ****** hospital/ER. SJS is well-known in the medical field because it IS so serious, and is not usually difficult to diagnose. Sounds like that situation could have turned out much worse.

Doctor 1: "Dey hey, you ever seen that"
Doctor 2: "nah, clueless here"
Doctor 3: "hmm, me neither'
Doctor 4: "you mean, heart disease?"

Doctor 4 leaves the surgery room in disgust

Medical errors are the 3rd cause of death in the U.S. And since 9/11 there have been over 9 million Americans die of it.

So yeah, overworking and a lack of knowledge can be scary for people. That's why we call them Doctors
 

Violent Cuts

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20 years ago I was diagnosed with Crohn's, which at the time I had never heard of. Now most have but still rather uncommon. My wife has celiac so we're a real treat to be around considering we both have digestive issues.
 

wildcatadam6

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Hereditary hemochromatosis. A friend has it. Basically, he stores too much iron in his blood....his body doesn't excrete it normally.

Regular blood donations are the standard of care. It's manageable, but it can lead to many problems later on in life if undiagnosed, which it usually is.
 

CatsFanGG24

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"One luckily knew about it?" That's scary and sounds like a ****** hospital/ER. SJS is well-known in the medical field because it IS so serious, and is not usually difficult to diagnose. Sounds like that situation could have turned out much worse.
The rarity of it makes it hard to diagnose. Most DRs only read of it in textbooks.
 

DSmith21

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Priapism. Hurts initially but you get over it. Then its Smiling Bob all the way.

http://www.dailymail.co.uk/sciencet...er-venom-cause-hour-erections-new-Viagra.html

 
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Supreme Lord Z

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Bad hygiene and lazy habits caught up with the OP. Put down the cake and candy bars and walk around the park a couple times you fat bastard. And wash your feet with s-o-a-p once in awhile there, lumpy.
 

80 Proof

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"One luckily knew about it?" That's scary and sounds like a ****** hospital/ER. SJS is well-known in the medical field because it IS so serious, and is not usually difficult to diagnose. Sounds like that situation could have turned out much worse.
My mom was an er and icu nurse for 30 years and had never treated a case of it. Two different hospitals in Lexington loomed at her before diagnosing it properly, both of which are considered very good hospitals.

It's a very rare disease, and until your skin starts falling off it can have similar symptoms to many other lesser illnesses.
 
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Ron Mehico

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"One luckily knew about it?" That's scary and sounds like a ****** hospital/ER. SJS is well-known in the medical field because it IS so serious, and is not usually difficult to diagnose. Sounds like that situation could have turned out much worse.

If you expect to go to a hospital and have them promptly and accurately diagnose diseases, especially rare ones, then you have a lot of faith in your fellow man. If you also expect to be prescribed the most effective medication/medications the majority of the time then you are a very optimistic man.
 

Tinker Dan

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"One luckily knew about it?" That's scary and sounds like a ****** hospital/ER. SJS is well-known in the medical field because it IS so serious, and is not usually difficult to diagnose. Sounds like that situation could have turned out much worse.
It was in 1994. They said it was not well known at the time. It was a military hospital, I just figured they had not seen it.
I just know every time I went to medical anywhere the Drs always asked me about it.

I was very sick and had shots of amoxicillin and the rocephin (sp). They were not sure which one did it.

I have to say, I never got as bad as many of the pictures I have seen. I seriously think I got lucky.
 

slick rick.ksr

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20 years ago I was diagnosed with Crohn's, which at the time I had never heard of. Now most have but still rather uncommon. My wife has celiac so we're a real treat to be around considering we both have digestive issues.
My niece has Crohns. My sympathy to you. For you and your wife to have what you have is tough