Understanding the medical establishment, with suggestions for improvement

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Understanding the medical establishment, with suggestions for improvement (12/28/05)

Throughout my life I have contended with a bevy of problems which I now know to be abnormal. In childhood it was just grouchiness, the occasional headache, and some oddball problems like insomnia and a lightheadedness when standing abruptly. The thing is, these things were such a part of my life I couldn't expect them to be abnormal. They were happening everyday, as a normal part of my day.

By college the situation had grown worse, ever so slowly, to horrible migraines and sensory sensitivity such that a bright light, loud noise, or old TV could trigger a migraine and send me to bed. At the time I figured it was because of the food, alcohol, allergies, or even my long delayed wisdom tooth removal. It wasn't till after college that I had the time to actually improve these things and see that nothing changed. I was terrified. I figured I had a brain tumor or something worse.

In a way, I was far worse. For three years all the scans and tests the doctors ran showed absolutely nothing wrong. Before a person turns to doctors for serious help I think we all have this assumption that they can fix anything - that they are more than human. The sad news is they aren't. They are people doing their jobs, just like us, subject to the same problems we have such as a lack of information or lapses in judgment and attention.

So I did what I always do when I'm in a hard place. I dug in and prepared to fight. I read a lot of books and other materials. I learnt to question the doctors on what was happening with my body, and to learn more about those things they even they knew. I wrote to every doctor I'd ever seen to have my records sent to me so I could establish a reference center for myself. I also learnt how the "system" works: about references, co-pays and what health insurance does and doesn't pay for. The importance of having a really good PCP can't be understated. So many aren't.

I got organized. After a while so much has been tried it is important not to repeat steps, which sounds shallow but really matters when it is getting up at 2am to lay around in a claustrophobic MRI chamber or have 80 needles stuck in me at once (that wasn't a good day at all). I made up an excel chart to keep track of it all, organized broadly into phases of my treatment vs. my symptoms. Here's an example one, and a blank one for you all. Mine had 12 symptoms and 14 tests, and is still a work in progress, unfortunately. I even went so far as to comb my little personal reference center for all of my BP readings and chart them, along with listing the event if it was something other than a regular doctors visit.

The funny thing was watching the progression of conditions. When we're dealing with syndromes the causality isn't known and so many could be linked even if they don't appear to be from the symptoms. Migraines, cluster headaches, tension headaches, and the like all have different names and some group of doctors likes to set down what the specifics of them are but without knowing what is causing them it is very hard to nail down one from the other. Different people will exhibit symptoms in different ways. That's just the way we are.

Neurology, in particular, faces this because it isn't a very developed science at the moment. How so? We've been doing medicine for thousands of years but most of that has been focused on communicable diseases and the like. It has only been in the last 150 to 50 years that we haven't needed to worry about those so much, due in large part to the advances in public health projects, so we could devote a larger proportion of our resources to topics like neurology. As a consequence one theory, still in it's begining stages, takes a broad swipe out of these. Post Concussive Syndome, IBS, Fibromyalgia, CFS, migraines, etc., are all probably descended from Central Sensitization (CS), a problem that can be triggered by traumatic head injuries like the ones I received a couple of times. But it has only been recently that the evidence for this has come together, so instead everyone with those problems has had to sit and wonder what was going on.

The downside? It's just a theory at the moment. A lot of docs don't even know about it and the few who do don't know how to treat it. This is strange because the theory states very plainly how it works. Amitriptyline works because it is an NMDA receptor antagonist, reducing the "throughput" of the glutamergic system on which CS depends on. Namenda, a new Alzheimer's drug, was specifically developed to be a NMDA receptor antagonist. For Alzheimer's. What's the link? People who've had a traumatic brain injury have a 37% higher risk of developing Alzheimer's than folks who haven't. Reduce the glutamate and the condition gets better. But the average doc on the ground doesn't even know Alzheimer's is linked to CS, nor do they know about CS, so their not going to think a drug like Namenda could help people with IBS, migraines, or the other things I mentioned.

The research Docs can't possibly explore CS as fast as we need them to. It is going to explain a lot, for a lot of people. Personally I think depression is linked to it as well. CS is maintained via dynorphin, which blocks dopamine, meaning sporadically low dopamine levels for the unfortunate recipient. That can cause depression. Believe me, I know.

Better yet is something like hypoglycemia. The condition is so vilified that doctors reserve it for all but the worst cases even though a lot of people, myself included, are clearly sensitive to drops in blood sugar. Turns out I'm not a grumpy person unless I've botched my blood sugar management. I wish I'd known that awhile ago. A poor understanding of food can only compound the problem. I reasoned that since veggies set off the problem then it couldn't have been sugar that was giving my problems. Turns out potatoes and corn are almost all simple sugars, as are most fruit juices. There's a reason diabetics are told to drink orange juice if their blood sugar crashes. It has enough sugar to completely reverse the effect and save them, assuming they get a longer acting food such as a protein into them before it crashes again (think minutes, not hours).

It's problems like these that have led me to believe our healthcare system definitely isn't helping as many people out as it could be. Partially that is because everything is still murky. Our DNA work should help reduce some of that, as will insights such as CS. It would also help if PCPs stopped being "gateways to the specialists" and instead acted as project managers, strategically deciding on which direction to investigate next with a patient. At some point, with cases like mine, the patient just turns into a cash cow, going back to the same specialist month after month to discuss the minutia of the latest drug treatment with no real understanding of the underlying problem and little positive effect for the patient. I don't think Docs would do that nearly as much if they saw a disease within a patient as a project that needed to be completed.

I found out I've been dealing with these things for most of my childhood and young adult years. They are getting better, and with everything I know now I'll probably try to apply it all to my job. But for those of you out there reading this, just stick it out. Don't give up, don't depend on your doctors to know what is best for you. That is up to you. Find one you can work with. Not one with a nice smile or the one that reassures you, one you can work with. If they won't manage your case you'll need to. That is up to you too. Good luck.

Some thoughts for the policy makers:

Drugs need to be classified and approved by their action(s) on the body, not the condition they treat. Each can do so many things to so many conditions that the current system only serves to keep people in the cold.
Healthcare is great, when it works. We need case managers. We need people we can call or email and ask "stupid" questions like "They said I need to reduce my sodium intake, but to how much? 20mg/day? 200mg? 2000mg?". We need a person in the doctor's offices to tell us when they are running late, why, and for how long. Once I waited 3 hours for a doc, checking once every half hour, being told he'd be along in a half hour every time. I left. That doc had no respect for me as a human being. I understand he was busy, but that is due to the case load he set for himself. All this does is beat a person away from medicine and towards more dangerous forms of treatment.
Patients aren't idiots. Give us real information instead of cruddy charts. People can and will act on the information you give them, but they can't if they don't have the information and don't know where to look for it. I understand some folks might not understand it but dumbing it down for everyone is NOT an acceptable response to that. Why not write multiple versions of the same inforation with increasingly details or scientific information in each? Let the patients choose how much they want to know. If we are afraid of them misreading something addres it directly with a misconceptions section and add to it as needed.
I'm completely thrown by the speed of all of this. We're on the verge of figuring out an extremely intricate process which will apply to everyone, and yet in the meantime the self help section of book stores is full of junk science that is actually selling because we're not keeping people informed. Instead their problems are extended, making them work at a reduced capacity for longer than they need have and costing us god knows how much in both real and intangible costs. Rather than waiting to figure something out completely we need to start stating "what we know", even if we're only 10% of the way that 10% might be just what people need to know.
Science is all about eliminating external variables so we can figure out what is really going on. So how can something as simple as parking be left as a problem? One doc's parking lot was so bad it sent my blood pressure sky high by the time I finally got in. It might be "good" for finding the problem but that sort of thing will hide other problems. Other problems like this include: the wait in the waiting room; billing and referal hassles; and refilling a prescription. If the doc has put me on a drug why aren't they responsible for taking me off of it when necessary, rather than making them keep reapproving it? They're not that quick about approving the refill and some of us are on drugs that have withdrawal symptoms. I've had a few that like to hold the refill and make me come back in to get it, when I'm on the drug long term and they know it. To me, that's not doctoring. It's extortion.

I understand a lot of these things are being held up because folks are afraid of law suits. Ok, so lets say that and tackle that problem then. A lot of folks have ideas on tort reform and some are quite good, but they are not going to happen until someone makes it happen. As a consequence we're going to continue having problems until someone identifies the root problems and fixes them. So speak up, please!

Update (11/26/2006): Michael Gurven and colleagues of UC Santa Barbara have been studying the life expectancy of modern day hunter gathers and found something interesting. While 40 to 50% of the children born die before the age of 15, once a person hits 15 they have a 40% change of making 65, and by the time folks are 70 and higher the mortality rate is no higher than it is in the US. I talked above about the changes in medicine over the last 150 years in diminishing the effect of communicable diseases and poor sanitary conditions. That would have taken care of the 40-50% deaths rate for children under 15. So what advances have we made after that? It sounds like none. Think about that. Someone needs to start applying the lessons of Systems Safety to our food supply. Real Food by Nina Planck made me realize that. Omega 6 to 9 ratios, powdered milk, corn based diets, homogenization, pasteurization, etc. We've made a mistep someplace and the trick now is to find it. Living a simplier diet isn't a bad thing anyway. Thanks Nina!