The ineptitude of doctors never ceases to amaze me. One particularly idiotic fellow proudly announced to me and the entire office that he'd discovered I have diabetes. Even if that has been true, the manner in which he announced his pleasure at the epiphany made me want to punch him in the balls. hard. After a confused and sad ride home it only took a short talk with my extremely unqualified wife to convince me that he is mentally challenged and had no idea what he was talking about. Of course she was right.

In a fun twist, a month later I contacted a different Dr's office in the same plaza to get a new doctor. I wanted to verify it wasn't the same location, so I specifically asked if he worked there. The attendant said "No, but why do you ask?" I told her the story and she said that he had applied to be a part of their practice and, after my call, ther was an extremely slim chance of that happening. Made my day.

> The ineptitude of doctors never ceases to amaze me

Yeah there are stupid people in all professions but doctors in general are overworked and there's only so much specialized knowledge that generalists can hold in their heads.

Who knows. Maybe this will help? http://www.businessinsider.com/ibms-watson-may-soon-be-the-b...

The managerial ineptitude of limiting doctor supply so they are overworked is even more medical system idiocy.

Not a direct response to what you said, but since this is a common discussion on HN, I just want to get some facts straight pre-emptively:

1) The AMA has nothing to do with limiting the supply of doctors in the US

2) The AAMC (not the AMA) formerly limited the number of medical students per-year in the US, but they stopped this practice sometime around 2004 with the stated goal of increasing the number of medical school graduates.

3) Even if we doubled the number of medical school graduates overnight, we still would not have more practicing physicians in the US, because the bottleneck occurs during residency (after medical school) - there are a very limited number of residency slots.

4) Residency programs in the US are funded by the federal government through Medicare, so increasing the number of practicing physicians would require increasing funding to hospitals that offer residency programs by increasing spending on Medicare. This is both politically complicated and incredibly expensive (training a resident is very cost-intensive when you look at the big picture).

So yes, there is definitely an issue with the number of practicing physicians in the US, but fixing it requires Congressional authorization to increase spending (and not just by a little), so it's unlikely to change anytime soon.

So how about a residency system that doesn't depend on medicare government funding? Or accepting foreign residency programs? I wouldn't think canadian, scandianvian, british, german, australlian, etc residencies and doctors should be considered invalid for example. From what I know, even being a Sweden trained doctor makes it hard to transfer into the USA and get a licence.

Residents from what I know are not well paid, what makes it a profit cost center for them that they require government funding for it?

The reason why foreign residency programs aren't considered valid in the US is quality control, from both competency and medico-legal standpoints. If you were CEO of a private practice or hospital in New York City, who would you hire? A grad straight out of a US residency or one out of Swedish residency? The safer bet is the one straight out of US residency for numerous reasons: you can more easily trust and call his references, he has already likely taken the US medical licensing exams, you don't have to give him an English comprehension test, familiar with the mess that is US medical system, etc...

As a CEO of a hospital that wants to make money I would hire the Swedish grad for less and give him a 4 month US legal medical mess class for a lot less in cost that wouldn't involve a doctor. Since I'm known as a hospital that accepts non-us residency people, I can save a lot of money until the market resolves this inefficiency.

Also there are the other 5 anglo countries, which will have no problems with english. Many of these UK, german, etc grads could also be people from the US originally, so there wont be english competency problems there. Many europeans also have excellent english on average, like germans and scandianvians. It would be miles ahead of the average non-west euro immigrant software engineer that is very common in the USA.

QC and skills wise, I don't have much worries from these top tier countries medical practices. Do you freak out if you have to go to a hospital in Sweden because the doctors may be bad!?

I've heard of residents being paid as little as $25-30k/yr.

The issue is largely that you have an attending physician making a great deal of money (compared to the median US, not necessarily for a doctor) who spends the majority of his or her time teaching, watching, and fixing what the resident does.

You can easily have a hospital/government (not sure what the funding split is) spending $500k/yr for $100k/yr in productivity.

Is there some reason that hospitals can't fund the programs themselves? Or do they just choose not to?

More usefully, what could be done to get hospitals to fund the programs? Some hospital systems have billions of net income, they can clearly afford to fund at least a few residencies.

Couldn't it be same incentive why we like interns in tech? In tech, we love internships and most top companies go out of their way to have attractive internship programmes. This allows you to (1) filter future hires much better than hour long interview (2) lot of less complicated stuff can be offloaded to them (3) well, yeah, cheap labor (4) much better cultural training (5) young energetic employees with passion to improve things.

If consumers of IT products were given the right to potentially sue for every bug that resulted in adverse situations arising for them, the whole industry would collapse in less than a year.

Now, put yourself in the shoes of a company/NGO that arose to fill in the abandoned niche afterwards. Would you be willing to take in a junior employee and let it do unsupervised work? Would the affordability, cultural fitness or "passion" of said junior employee make a big factor in your decision?

We obviously don't give wheels to interns and all go on vacation. Initially interns gets work that is fairly low risk to your business. You observe their quality and evolution and gradually give them work that has higher stacks. Same for residents, I would think they would get work that is at Nurse+ level initially, then may be they start as helping hand in operating rooms and so on. As you see they are reliable and consistent, you increase your risk tolerance. Although tech industry don't get as many law suits I think they face much higher financial consequences for screwing up. Imagine Facebook intern bringing down a service because of an error. That would be equivalent of many lawsuits in terms of loss of revenue.

> Although tech industry don't get as many law suits I think they face much higher financial consequences for screwing up.

Agreed on that, though there is an upper limit on that, you cannot lose more revenue than you make over the time it takes to resolve the incident.

On the other hand, doctors can be assigned punitive charges (is the term correct?) well beyond the "objective" loss of the patient. That kind of stuff can bankrupt health care practitioners... that's why they have insurance AND legal departments.

Maybe it is just the perception of risk, but I think that explains why there's much more caution around it.

Another data point. Medical schools in US accept only people that has successfully completed an undergraduate degree with transferable skills. In many countries, you can enter medical school after highschool (though the degree takes more years of study than your standard 4 year bachelors).

> Some hospital systems have billions of net income, they can clearly afford to fund at least a few residencies.

What incentive, economic or otherwise, exists that would cause them to do that?

Yes, that was the question I was asking in the previous sentence.

I wouldn't be surprised if hospitals were able to benefit from cheaper doctors though.

Public benefit.

What are the expenses involved in a med student's residency? From the outside it looks like they do a full doctor's work, but are only paid 40k a year.

Hey, look at the bright side, at least yours didn't turn out to be stage IIIc cancer, after three months and two doctors assuring me "You're young! It's probably nothing." Even with a family history and scans showing an enlarged lymph node.

This is the most common story you'll hear from a cancer patient.

The most upsetting part is how critical early diagnosis is: the difference between stage II and IIIc can be the difference between 80% vs 20% five-year survival.

Good doctors are few and far between, and good diagnosticians... I dunno, me and my family have been in and out of the medical system for a while now, and I'm yet to meet one.

When you go in, do your own research, get a copy of your results, and tell them exactly what to do.

> Good doctors are few and far between, and good diagnosticians...

This has been my experience, repeatedly. The GPs I have had aren't motivated to get to the bottom of any problem that can't be solved in one 15 minute visit, and refers anything out to specialists. The specialists have all diagnosed me with whatever issues fit their specialty. No one in the US medical field seems interested in actually finding out the real problems, just what's easy for them to diagnose or fix.

After writing this I realize how cynical it reads, but it's the truth! I'm sure there are good doctors out there -- maybe in a teaching hospital?

I know doctors will hate that, but you do have to do your own research.

My mother was on phen fen for weeks even after telling the doctor she had chest pains. Only after she read a newspaper did she find out how horrible it was. The doctor was clueless and careless.

I have strong upper chest pains (constant pressure), regardless of position. Went to first doctor, was told "it's just bruised ribs", even though I don't play any sports or do any serious workouts.

Went to a second doctor recently after a few months as it started getting worse. "It's just heartburn", even though I told him I already take a PPI, H2 blocker and calcium. I've had heartburn for 12 years and know this was a very different feeling, but he basically ignored me and proceeded to ask me about how often I went to church and about my sex life. I wish I was joking. So he wrote me a prescription for ranitidine (a weaker H2 blocker, sold as Zantac OTC.)

But thankfully the second time I was given a blood test and found that my vitamin D level was <9ng/ml, even though I was already taking vitamin supplements. So he wrote me a prescription for 150,000 IU of D2 weekly. That seemed to make it worse.

So I looked into this and found that D2 has poor bioavailability and depletes magnesium. So I obtained D3 and magnesium supplements, am taking a saner supplement level (10,000 IU daily), and have been feeling quite a bit better. Not perfect, but supposedly it can take three months to fully recover.

I was very surprised to learn that a lot of people develop random musculoskeletal pains in response to very low vitamin D levels. Neither doctor even considered that possibility.

I was very worried that this might have been something more serious, and it was basically impossible to convince either of two doctors to actually do some real tests just to be safe. When I read stories like this, I can't help but wonder, what if it was the start of cancer (which killed my father)? And by the time the symptoms got bad enough to not write me off right away, it'd be too late to treat it?

I've had similarly terrible experiences with fatigue during the day due to my job's oncall responsibilities. That doctor told me it was depression (I am absolutely not depressed), and tried to get me to start taking Zoloft, which I refused.

These GP doctors just don't listen to their patients nor take their concerns seriously. I'm sure everyone always assumes the worst when something bad starts to happen, and likely it does turn out to be nothing. But one in three people do develop cancer in their lifetimes. How the hell are we supposed to get it diagnosed early when doctors just casually dismiss us out of hand?

I can relate to this. A few years ago I was a 30 year old guy who felt like a feeble 70 year old. I was tired, depressed, and just didn't feel well at all. I had a blood test and the doc was flabbergasted at how low my Vitamin D levels were. Technically I had rickets! But then I started taking 10-15k of D3 a day and in a couple of weeks I felt great. Now I take 5k in the summer and 10k in the winter and haven't a had a problem since.

So, moral of the story: get your Vitamin D levels checked. And take D3, not D2.

Same here, add poor circulation to the list of symptoms. I no longer have perpetually cold feet. I had to have my GP refer me to an endocrinologist though. The endocrinologist spotted it right away. Super cheap to treat. Been taking it for about ~6 mos.

>So, moral of the story: get your Vitamin D levels checked. And take D3, not D2.

Especially if you work indoors or otherwise avoid sunlight. (I don't take special pains to avoid the sun. I like the sun, but I do avoid outdoors when it is too hot, which is most of the time in my area.)

Exactly how I felt! I'm 31 now myself. I'm really hoping my experience is like yours, because I'm still not 100% myself again. Currently 2.5 weeks in.

I can't even imagine what my levels were prior to taking the 500% RDV supplement I was on before having my blood checked. But at <9ng/ml, I most likely have osteomalacia.

All doctors will only prescribe D2 (ergocalciferol); so you really need to go and get D3 (cholecalciferol). Your body naturally produces D3, and the latter is much more bioavailable. Because of this, you will also want to scale down your dose and not take as much. It's possible to go too far and end up with hypervitaminosis, which ironically can also cause random bone pains, and calcification of your arteries.

It's important to test your 25(OH)-D levels every few months when taking extreme supplements.

Also, be sure you are getting enough calcium and magnesium. These are the chemicals needed to maintain healthy bones. Doctors do not prescribe the magnesium, and large vitamin D supplements will deplete this, also leading to calcification and other problems.

Finally, for anyone living north of South Carolina, you will not receive enough UVB radiation from the sun to produce sufficient levels of vitamin D during the winter months, and milk really has very little vitamin D. So you might want to test and possibly supplement if you are experiencing random musculoskeletal pains. Low levels are fairly common, and usually not a huge deal. But at my level, it was fairly severe.

Out of curiosity, why do doctors only prescribe D2? It sounds from your description like there's essentially no reason they shouldn't be prescribing D3, and yet apparently none do.

A doctor did advise me to take D3, though she's an unusual one, far more helpful than my official insurance-provided doctor. I don't know what the official one would've prescribed, because none of them even considered testing for it.

Vitamin K should be considered here as well. K1 is found in leafy greens, while K2 is found in meat and poultry (liver is a super source), and natto.

> and natto

... erm, well ... maybe chest pains aren't so bad after all :P

As the joke goes:

Q: What do you call someone who finishes bottom of their class in medical school?

A: Doctor.

I've been to my GP three times before I realized I've never even met him. I've been seeing a nurse practitioner.

My GP is a Certified Nurse Practitioner and I'm ok with that because she actually talks to me about my life and what is going on to try and get the whole picture.

Isn't it strange that there is still no career path from nurse to doctor? Medicine is still a closed shop.

There is a path from nurse to doctor. It's called medical school. I've known nurses who have made the jump.

Doctors are people like you and I. They are imperfect and make mistakes. There are plenty of brilliant doctors out there and not-so-good doctors out there. It takes responsibility on the patients' part to advocate for themselves, do some research, and find the right fit for them.

To add to this, I used to be very critical of doctors but having had various metabolic challenges and going off and learning all that stuff, medicine is a difficult confusing mess.

If you disagree, read this (about 2/3 of which is relevant to me):

http://www.amazon.com/Endocrinology-Adult-Pediatric-2--Set/d...

There are thousands of diseases and not that many different symptoms. Most serious diseases have numbers of mild conditions that look very similar.

This is not to say there are not major issues with the way medicine is researched and practised. And that being a doctor does tend to encourage people to be arrogant and overconfident. And that the medical basically selects people who are good at memorizing stuff.

A friend of mine was told by a doctor that he had AIDS as it fit his symptoms and he had been an inter vinous drug user long in the past (what drug counselor hasn't?). Didn't wait for test results. He was a bit peeved and relieved to find a negative test 2 weeks later. He had the flu.

This is going to sound stupid, but I love you. Thanks very much for writing this.

Why wouldn't your GP even order an ultrasound? If you're experiencing jaundice, and are otherwise healthy, gallstones are the most likely culprit and can be detected via a simple ultrasound in most cases.

Because my GP is... not cut out for his job, to put it nicely. I need to change, but it's irrelevant right now as I've circumvented him.

I thought his approach was weird and off, and must have been something I'd bought about:

Him: "tell me word by word what you want me to put in your notes"

Me: "uh, what? I don't care. I just want you to at least have a crack at figuring out what's wrong with me."

Him: "'Abdominal pain.', then."

until I learned that he says the same to practically everybody he "treats".

I asked for an ultrasound, as I had suspected gallstones about 18 months into the ongoing nightmare - he said, and I quote: "You're not fat. You're not female. You're not forty. You don't have gallstones. You have hypochondria. I'm not wasting the time it'd take to request one."

I get that he sees dozens or more patients per day, and that it's got to be an incredibly trying job, like tech support but worse, but if you can't take the heat... get out of the kitchen, before you inadvertently kill someone, and go be a lecturer or something.

Compassion fatigue is real and it kills. http://en.wikipedia.org/wiki/Compassion_fatigue

What country is your GP in?

If they're in the UK I implore you to complain about the lapses of care. Look at it this way, it isn't up to you to parse judgement over if the care you received was fitting or not, but it gives people who are qualified to do so a heads up so they can examine it.

The NHS has a lot of very good GPs. This clown is giving the service a bad name and worse still giving people a sub-standard quality of care. Please complain to the health authority.

I've had a similar (albeit much less serious) situation with a GP. Went to one and he put me on some pills. The next day I was in so much pain I went to another who sent me to hospital and he and every doctor I saw for the next couple of days was shocked the first GP hadn't sent me as a precaution as that should be SOP. I've had to see the first GP a few times (just for basic things because other GP's were busy) since then and every time I've regretted it. Change GP asap.

Your GP doesn't understand statistics. And is an asshole.

Are you allowed to sue the GP?

Also, if you don't mind me asking, why didn't you get a second opinion sooner?

This seriously sounds like malpractice. If I were you, I'd be consulting a lawyer.

> ... go be a lecturer or something.

That's a bit harsh, isn't it? & Are you sure you'd want him to go and propagate his habits by teaching them to others?

Dude... I don't know how you survived that!

My gallbladder died, went necrotic and nearly killed me in the span of a few short days.

Good on you for finally getting the problem fixed and having an iron constitution, mate. Next time a little less waiting for a second opinion may be in order!

I'm really sorry to hear about your situation. For me I kind of had the opposite experience with my gallstones. I was just having general issues in the morning (heartburn, urgent diarrhea, and just discomfort) and I couldn't pin it down on my diet. Eating worse made me feel better than eating well. Doctor says it can be multiple things, let's just go and do an ultrasound on your stomach. Within five minutes, yes you have gallstones. Schedule surgery, in surgery and out two hours later then an hour after that I'm at home chilling for two days. Then my doctor explains why eating crappy made me feel better, because the stones were keeping the duct open and bile was coming out all the time, so fatty foods used it up. When I ate well there was always extra bile. Of course fast forward to now and if I eat terrible I will be on the toilet asap.

Since Steven has a child coming, I really hope that he had some life insurance.

I hope I don't derail by telling everyone: if you have someone who depends on you, get life insurance.

Apart from his wife who was working as well ,he didn't have anyone anyone who depended on him . They found out they where going to have a baby until after the tumour.

Good comment. For people in their mid-30s and young kids, I assume term life is a good option?

Term life is almost (almost!) always the best option if your goal is actual life insurance as opposed to investment, asset protection, or something other than you having a heart attack or getting hit by a bus.

Whole life is rarely a good investment choice unless you have considerable assets, but HN has a much higher income than the median so there are likely folks here for which is makes very good financial sense.

But yes, if you have kids both parents absolutely should have term life insurance no matter what. It's very cheap, incredibly cheap if you are not a smoker and have no health issues.

Term life insurance is a great option. One way I've heard it said: "For the price of pizza-for-4 each month, you can have ~10x your annual salary in coverage for a 15 year term."

To answer you question no Steven did not have life insurance ! So everything thing that is being donated is for the future of his baby . I too was hoping he had life insurance :-(

I have found out through his family that he didn't ! So everything thing that is being donated is for the future of his baby . I too was hoping he had life insurance :-(

Meanwhile, until you get it removed, did your doctor put you on a strict no-fat diet? Mine did (I wasn't as bad, but had stones in the duct causing pain/damage). And he meant 0 fat (kind of hard to do), or as close as possible to it. I guess fat causes the gallbladder to start contracting (to push an extra dose of bile into the digestive system), so without fat in your diet it will just be the steady ooze of bile from your liver.

I had the same experience. I was about the same age when I felt bad a lot. I had developed food allergies and suffered from nausea after I've eaten something along with a slight chest pain. It was going on for weeks before I went to my doctor and got diagnosed with a single gallstone and a lot of slug right away. In those weeks before, I was terrified that it could something more serious. But I told myself, that it was just the stress of the current project and the traveling (each week). After the diagnose, I went to the hospital three times when it was really worse, but denied further actions because of my project. The last time I went was on the last day of my project. I was in a really bad shape. I was operated a month later and today I am fine.

What I learned: See a doctor ASAP and do not delay treatment, even when working on one of the best projects.

I am about 10 months in to a similar experience, pre-diagnosis, and I can echo your statements about how terrifying the unknown can be. Being surprised to wake up in the morning can really alter your perception of reality. I think there is an enormous amount of abstraction needed in this perception to avoid going insane. I think it is important to be able to remove oneself from the reality of ones own mortality and I don't think it is possible to live normally while being too aware of it. Having said that, If recover from this whole thing I think it would ultimately be a good thing to have gone through as my appreciation of normal life would be much higher.

Good luck for your surgery.

Hehe wow it's funny to see my words written by someone else, I've come out of the other end of this, for three months I'd be surprised to be alive in the morning after nights of wakin up to chest pains (when I was 22 and relatively healthy). Like everything it can change you, it gave me a different way of seeing the world and I can slip back into that cold mindset to consider things when I need a bit of distance. It also gave me even more appetite for doing fun things and staying true to my natural, childish disposition :)

I'll never forget the ceiling of the apartment I spent so many nights waking up in pain seeing, or the sun shining on the wall in the mornings as I thought "oh, I'm alive!"

Best of luck to you too friend.

I also have had issues with my gallbladder that ultimately resulted in its removal by a surgeon. However, afterwards I gained over 120 pounds over a three year period. Recently a coworker brought it to my attention that grains, particularly wheat and anything with gliadin in it, can be especially harsh like sandpaper on the intestinal lining leading to a condition known as permeated gut.

The gut contains millions of microscopic structures known as microvilli and they facilitate the absorption of nutrients into our bodies. As the gut lining becomes more and more damaged by plant lectins like gliadin our bodies begin to suffer from starvation even as we intake higher numbers of raw calories. We also become susceptible to autoimmune diseases because lectins escape through the damaged gut lining into the body causing the body to mount a full scale autoimmune response. This happens as a result of our bodies producing antibodies to our own protein structures like the pancreal lining, the myelin sheaths in the brain, and other important components of the human body because lectins highly resemble these proteins.

Additionally I have since learned that a good portion of people who required surgical gallbladder removal have undiagnosed celiac disease or non-celiac gluten intolerance.

The only way to test for this if you do not have the antibodies they test for to make a diagnosis is to get a biopsy of your gut villi. They can use a camera capsule to inspect the state of your villi and make a recommendation.

Upon removing all grains from my diet and obsessively avoiding products that contain grains of any kind such as soy sauce for the past 10 months I have dropped 95 pounds and am on tract to return to my post graduation weight of 190.

This is not medical advice please seek the assistance of a physician before undergoing any significant dietary changes in your life.

> and I'm having surgery at some point hopefully soon

I have to ask why you're not having emergency surgery if this is such a serious issue?

I went into an ER (American) in 2009 because of severe stomach pains. Within 12 hours I was on the table, and the surgeon said I had the worst gall bladder he's ever seen that wasn't removed in pieces (I was 23 at the time).

A good lesson not to ignore things, and for everyone to be aware that sudden changes in their colleagues behaviors are more likely serious issues of any sort than they are laziness or idiocy.

I was fortunate in college to discover fairly serious cancer very early (total accident), and am very appreciative of the support I received at the time. Likewise, someone very close to me who had been behaving oddly for a while was diagnosed with a serious nutritional deficiency that explained everything.

Bodies and minds are terribly imperfect, and if someone you know is suddenly behaving oddly, at best it's a serious personal problem, at worst it's a physical problem even they may not recognize. Be a friend to them!

Just want to say I've been here too. I also had supposed gallbladder failings. Bouts of painful nausea so strong I couldn't begin to describe. Vomiting for days on end, even water un-drinkable. Nearly every episode ended in tears, screaming, non-stop dry-heaving, brain-stopping trips to the ER, where only Dilauded would calm me enough to sleep and somehow "reset".

After 25+ of these episodes (which would last typically 2 weeks, building towards the end), 7+ doctors, so many scans and tests I can't describe, long periods of missed work and play, and abuse of drugs that helped (thankfully none really did much, even weed in copious amounts barely helped so I never used it much). I'd get so sick from eating I was prescribed Xanax for the massive panic attacks I'd get just looking or thinking of food, because my fear of pain was so strong.

I had my gallbladder removed by the 5th doctor. I thought it worked. I stuck to a very clean low-acid diet after that, avoided tough food (I had developed a hiatal hernia from the vomiting), and took PPI's religiously and was fine for 8 months. I thought I was cured. I stopped the PPI's and within a month I was back at the ER. Pretty devastating. Now, I can control it. I cycle on PPI's, avoid all smoking and alcohol, as well as eating hot/spicy/acidic food too often. I've been 4 months now without an attack on this regimin and I feel pretty confident.

The worst part they never mention with undiagnosed illnesses of things are the mental side-effects. I was pretty much ostracized by large groups of people who certainly believed I was either looking for attention or avoiding admitting I had an eating disorder. I even had a doctor at the ER once tell my mom that's what she thought. My parent's even began to doubt I was actually ill. Finally, after months, I even doubted myself. The pain was real, but perhaps I was inflicting it on myself somehow? (crazy for me to think back on my mental state at this point). I felt too weird to even hang out with old friends, it's not masculine to not be able to eat. Paranoias and fears grew with each sickness and month of uncertainty. By the ended I was certainly clinically depressed. I felt my entire persona had melted away, I was empty. I didn't even know how to talk to my mom on the phone, I knew she would immediately recognize something wrong with me. I lost confidence, happiness.

Luckily that all returns if you can maintain health. Just four months ago I had reached my low; malnourished, weak, paranoid, afraid, tired, forgetful, slow. So scared of more pain, because at this point I felt I was running low on "reasons to live".

But, within a month of eating well my energy and happiness were back, with two more months I found myself feeling like "me" again, something I hadn't felt since those last 8 months of health, and before that since years before. And the difference was just small changes to diet, and avoiding many social situations that make that pretty much unavoidable.

I don't know what the moral of the story is. I feel like I did everything I could and struck out, and it's pure luck that I'm still here today. But I guess I'm thankful. I still am dubious on whether life is "worth it", and I couldn't imagine bringing kids into a world where the sort of suffering I went through is even remotely possible. But perhaps it did help me grow up and gain perspective on what matters.

Keep searching for solutions, keep experimenting, don't be afraid to ask for help and tell doctors to fuck off.

I think your last paragraph gave a fine moral. I wonder how many people who could have lived died because their support disappeared? The quicksand kills so many because no one is left to throw a lifeline. It's so very hard to believe in yourself when no one else does.

> Mortality is the ticking timer that keeps you alive.

For some people this may be true. Here is an important alternate view - that we rationalize death as being valuable because we can;t fix it yet.

http://www.nickbostrom.com/fable/dragon.html

More on what you can do here

http://www.sens.org/

Man, I can only say "thank you" for sharing your story. Very touchy. I hope you will recover soon.

Thank you for the sincere post. Best of luck with your surgery, hope everything turns out well.

First, I'd like to say thank you for writing this. I'd also like to add a little for others who may be in a similar situation.

Just to set the background, I'm in my mid-40's, was a responsible adult, and had a house and family, and worked as a programmer for 15 years. I was fairly typical as a programmer -- a bit overfocused, had an excellent memory, strong reading skills, etc... I wouldn't say I was a great programmer, but I was a solid, competent programmer at the senior-ish/lead level.

Initially I was diagnosed with sleep apnea. Once I was on a CPAP machine I had periods where I'd sleep more-or-less normally, but I'd still go for periods or three to six months without normal sleep. This went on for three years or so. During periods of extreme fatigue my immune system would collapse and I'd get sick at the drop of a hat, and normally small things would make me really sick. Well, that was pertty horrible, but not too bad, really. I could get through it and, once the CPAP was set up correctly I'd eventually come back to normal after a few months.

I'm not really sure, but I think that sometime in that period I picked up a disease like chronic fatigue syndrome or mono or something that made it so that fatigue and confusion cause real trouble in my life. My memory is crap, and is simply gone most of the time. I have an extremely hard time getting focused and oriented. It's destroyed me financially, emotionaly, and caused a whole bunch of damage in my life. I'm just barely getting by and living in my van.

Sometime I'm better than others, but I go through these periods of extreme fatigue, where I mentally "fade out". My memory gets extremely bad and I forget things within seconds or minutes. I have trouble recognizing faces, names, etc... as well as just getting myself organized and functioning like an adult. There are periods where I come around and my brain starts working sort-of normally again, but it doesn't seem to last for very long.

I've seen seven or eight different doctors, ending three years ago when I lost my job and ran out of money. I didn't had any luck getting any of them to take my condition seriously. I'd tell them that something other than sleep apnea is going on, but they can't find anything, at least nothing obvious, so they don't believe anything is really happening, that it's "just psychological". But I know my self better -- for example I Know I had a college level reading ability in the sixth grade. Now I have trouble remembering the title of a book I read a week ago.

I'm solidly in the "darkest fears made manifest" stage of this thing. Part of me knows I'll survive this, that this will pass and that everyone deals with sickness, old age, and death. It has been (very) slowly getting better. I still have bad periods, but they aren't quite as often or as long, or as bad, as they were several years ago. Even still, when I'm in the middle of one of these periods of fatigue and confusion I'm convinced that it'll kill me.

So, and here's the real point of this, I'm still committed to being a force for good in the world. I'm there for my kids, regularly volunteer, and stay involved with helping other people. Like you say, mortality is the ticking timer that keeps you alive.

I'm not trying to do that "diagnose you over the Internet" thing, but did any of your doctors ever mention or look into autonomic nervous system issues? Reason I ask is that what you describe is somewhat similar to the kind of cognitive impairment ("brain fog") and fatigue I experience with dysautonomia. Although it sounds like your symptoms are much more extreme, they're not inconsistent with what I've seen other patients experience.

For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.

Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.

In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.

Good luck, and good for you in still fighting to be a positive force in the world and for your family.

This is incredibly frightening, as I had mono when I was 26, and have never felt as "sharp" afterwards...just been telling myself all in my head, or a part of getting older

Thank you, I'll find out more about dysautonomia, and get on with finding a solution to this thing.

My story is very similar to yours. Seeing a sleep doctor I was diagnosed with Idiopathic Hypersomnia, then later Narcolepsy.

Same memory issues, mental health issues, physical health getting worse year after year throughout my whole 20's. I found out just a few months back I actually had Lyme disease for almost a decade, that had gone undiagnosed and untreated.

http://www.ilads.org/lyme/lyme-quickfacts.php

50% of patients with Lyme don't recall a tick bite.

There are over 100 strains of borrelia in the US that can potentially infect humans, and over 300 worldwide.

A Western blot test by a reputable laboratory is the most reliable test out there, like this one:

http://www.igenex.com

If you do have Lyme disease, there are natural, lasting ways to heal:

http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Co...

FYI: acute diabetes has the same symptoms (fatigue, memory loss, fade out) as you mentioned, and is easy and cheap to diagnose with a blood test. Skip sugary drinks and candy until you get a test.

have you seen a consultant neurologist? or a consultant virologist?

I've seen a neurologist who my GP thought highly of, but it quickly turned into probably the worst doctor's visit I ever had.

About ten minutes into the exam he told me that it was either depression, or sleep apnea, and that I was just looking for a way to get out of working.

I'll admit that the Part of it was my fault -- I was beyond exhaustion and not exactly on my best behavior. But I also had seen maybe eight different doctors before then, and, other than sleep apnea, had been misdiagnosed and mistreated for several things already. My GP didn't seem to believe that there was a real problem, and I was just falling apart physically, financially, and emotionally.

That's about where I gave up hope of getting useful medical help, and decided that I was just going to tough this thing out, and if it kills me then that's just how it goes sometimes... Not a smart choice, but that's where I was at the time.

Any way, that was then, this is now. Writing these posts has gotten me to think about how long this has been going on, and, now that I'm more clear-headed, it's time to start seeing doctors again and see if I can get this fixed.

I worry for you, and I hope you get to see people who do the right tests and scans and help you.

I hope you sue the living shit out of your GP.