I just saw an episode of mystery diagnosis where this kid had a super rare disorder no one could figure out. He had very, very high concetrations of lactic acid in his blood. He was barely alive and hooked up to a glucose drip. Finally some genius thought... maybe it is a metabolic disorder and they called in a specialist. Turns out the kid is lacking an enzyme that turns glucose into energy, it was turning it to lactic acid instead and that was damaging his muscles and nerves. So they take him off the drip and the lactic acid goes down. They tell the parents the problem with their kid and that he's going to probably die very young.

But someone tells the parents, hey... you could just not feed him any carbohydrates he can live on a ketogenic diet. So then they cut to the kid 10 years later, he's doing great on his ketogenic diet. The first ever to survive his disorder that long.

That is so awesome. To be honest tho, I'm suprised someone even mentioned a ketogenic diet.

Wow, that's an amazing story!

But I am very sad that the fear of ketogenic diets has ended so many lives of the people who sufferred the same disease

In a similar vein, I believe a strict ketogenic diet has been used in treating severe cases of epilipsy when conventional drug therapy was failing.

And I don't remember the disease, but the fact-based movie Lorenzo's Oil used a high-fat diet to treat an "untreatable" case.

It is extremely sad that the medical establishment doesn't use nutritional therapies more often. Lord knows that a change in diet wouldn't have near as many undesirable side effects.

If you get a chance to watch it, look for the show "Mystery Diagnosis". Its really frustrating to watch these people go from doctor to doctor not getting diagnosed with diseases and told its all in their head. Some of the diseases I frickin' diagnosed and were obvious, like epilepsy. I couldn't believe this woman went undiagnosed for years and years.

Last one I saw there was a woman who was always thin, cute and all her friends were. Yeah, the sort I wished would wake up one morning fat so they could know most of us feel. Well... she pretty much did. She put on weight at an absolutely astonshingly fast rate. And she was eating nothing.

She goes to doctor after doctor and no one believed her. No one believed that she was eating so little and exercising like she told them. They all blamed her weight gain on over eating. Because no one took her seriously they didn't do the tests that would reveal the problem. (Actually, they did do the one test that should have been a HUGE red flag, but they ignored it). This went on for years, she became extremely obese and started having other symptoms.

Finally she decided to take matter into her own hands. She requested all her medical records and test results. She started to investigate any test results that looked off and the one that popped out at her was cortisol. It was enormously out of range. Why had her doctor not responded to that?!?!?!?! She figured out she had Cushings.

Anyway, she went to UCLA medical center and they took one look at her, all the physical manifestations of the disease, all the lab work verified it. Really pretty freakin' simple disease to diagnose, but not one of the many, many doctors she saw were able to diagnose it. She had to figure it out herself.

Anyway, there was a tumour on her pituitary gland they removed and her cortisol levels were fine.

DUH!

Nancy- do you recall what channel that show comes on? Very interesting indeed. Thanks

Its on the Discovery Health Channel and it might also be on just the plain old Discovery channel. Good show!
http://health.discovery.com/tvlisti...d=0&channel=DHC

I'd imagine it's much easier to diagnose when your patient has all their symptoms highlighted, recorded, and edited into a nice 30-minute format and everything.

Well, the patients tell the story of how they go from doctor to doctor. Often times the doctors simply dismiss the patients as crazy or depressed. Then they have the doctor on that actually diagnosed the patient.

I don't know, I guess if someone told me, as one woman had, that she blacks out from time to time, one of the first things I'd check would be for epilepsy. But no, she had to visit a long stream of doctors before any of them even thought of epilepsy.

It seems to me that too many doctors are often doing a really lousy job of diagnosing. They're should be a computer model that they should work with that gets updated constantly with new information.

I mean... it took 10 years, 10 years!, for doctors to understand H. Pylori was the cause of most ulcers after it was discovered and published. And even then it was only due to an outreach effort of the NIH to tell doctors.

I'm not saying you're wrong, since I know there are doctors who don't seem to be motivated to keep up on all the latest as they should, and there are unfortunately quite a few who miss the boat entirely.

I have no experience being a doctor, but I do remember what it's like to try and get consistant, accurate information from a sick patient as an EMT. Some symptoms and signs are wildly different in a given number of people with the same condition... there are times when you can walk into a room and just KNOW what's wrong, and others where things just don't add up.

It's hard to resist armchair-quarterbacking, I guess.

This is because all us 'fat' people are lazy pigs! Don't ya know :P

That's terrible. Sometimes I just hate Doctors!

Thank you Nancy, I'm definitely keeping my eyes open for the shows. These are right up my alley

I'm sure there are people who don't make the doctor's job easy. But I hear over and over again how people try to tell the doctor their symptoms and they're blown off. There was one story on a message forum I read from a woman who suffered from Celiac (the reasonably easy to identify form) for almost 40 years before being diagnosed. At one time her doctor told her she was an alcoholic because her liver enzymes were off. She wasn't, she drink only on a few occassions a year, but this doctor refused to list. I'll have to find that link. Very frustrating story.

I think there's a few issues. First off, doctors have to hustle through patients at an incredibly fast clip, if you've got anything weird or atypical going on, it takes extra time. Next you've just got bad and lazy doctors. You've got doctors under pressure to not offer treatment and tests. How do doctors get feedback when they fail to identify patients? Usually the patient just moves along to different doctors, there's no follow up with the ones that failed to diagnose or treat. How can you learn from that?

Some diseases are incredibly rare and doctors never see them. This is where a good computer model could help the first doctor you see narrow in on what might be wrong.

Then I think there's a lot of doctors that just simply don't trust their patients for whatever reason. Some think they're crazy or depressed, others that they're intentionally making themselves or their kids ill. That shouldn't be the first thought that goes through the doctor's mind.

Thank you Nancy. This is very interesting.
I'm going to look for it, hopefully it is available here on the West Coast.
It is exactly the kind of show I love to watch.

Check out this story: http://www.glutenfreeforum.com/inde...showtopic=13511