So...what the hell's wrong with you, Shooter?
This is my answer to apu's question to me on another thread about ALS (and, specifically, my misdiagnosis with ALS and other illnesses):
Q: "If you don't mind me asking, what was the final diagnosis? How was it discovered? And how are you coping?"
A: Basically I had multiple infections (both viral and bacterial) that were slowly eating me alive.
I started having migratory shooting pains, chronic joint pain, extreme fatigue, and rapid weight gain years ago. (I gained 100 pounds in about 4 months, with absolutely no change in my diet or exercise program. I went from somewhat athletic to fatigued fat-ass that slept 20 hours a day after a brief flu-like period.) They initially tested me for thyroid and pituitary tumors. That first MRI is how they found the first spots on my brain - before they were full-fledged lesions. They were just hyper-intensive spots and 'plaques.' It's more common, by the way, to lose tons of weight with infections, but the infections affected my hormones in a way that made me balloon up.
I kept getting new symptoms over the years. Sleep disorders, aphasia, tremors, severe chest pains, left arm paralysis, left side of body paralysis, neck-down paralysis, memory loss, tinnitus, passing out, chemical sensitivity, etc. etc. In the end, I probably could have been Stephen Hawking's stunt double appearance-wise. As I said in the other thread, I was (mis)diagnosed with Parkinsons, Alzheimers, MS, CFS/FM, and ALS along the way - each time based on my symptom progression and test results. Technically, I still have many of the other things I was diagnosed with based on symptoms and test results - by clinical definition - but they were not the underlying, causative issues. They were just the icing on the cake.
I saw at least 22 doctors over the years, including some at top hospitals (Mayo,etc.) A few of the doctors thought I was nuts, because of the sheer number of symptoms. One doctor didn't even finish the exam and commented that it was either all psychosomatic or else I was the unluckiest bastard ever and I had 25+ different diseases. Most doctors would just space out at some point and start treating whatever their specialty (or first thought) was. I had enough symptoms and bad test results to keep them all busy. If I was seeing an endocrinologist, for example, she would try to treat just the endocrine issues (the infections affected my endocrine system, so my hormones were waaaaaay out of whack. One endocrinologist said I should be in medical textbooks because of my crazy high/low hormone levels.) I tested positive for some autoimmune disorders, so the rheumatologist kept busy. I have sleep disorders (again because of the infections), so I was given a CPAP and sleep meds by a sleep specialist. I have severe migraines (lesions!), so migraine specialists put me on migraine meds. Etc. etc. Not all these meds at once, of course. The infections were playing havoc with my brain, heart, and nervous system...and my endocrine and immune system were along for the ride. I had a 2-3 year period where it felt like I was having multiple heart attacks every day. I’m amazed my wife didn’t leave me.
The multi-systemic nature and the fact that certain symptoms tends to reinforce or mask each other made it very difficult to figure anything out. When you have certain infections, for example, your body will naturally retain heavy metals and toxins from the environment - all on its own - in a self-protective attempt to kill off the invaders. So I tested off the charts for toxic metals and the ‘environmental specialist’ thought that was the underlying problem. But, of course, it wasn't. They cle...
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[ 4.6 ms ] story [ 185 ms ] threadI work around hospitals some and every once in a while I get the odd feeling after watching a specialist scratch his head over a fuzzy black and white "slice" made by in imager with a magnet the size of a garbage truck that its all still so primitive.
Medicine has a long way yet to go.
Hell, lets just go all sci-fi and get right to the part where there's an iphone app for waving over a person and seeing their insides in full color in real time...
I've heard it suggested that Japan got "scan-happy" (patients want a scan, kind of like how US patients want antibiotics for their virus), so they built cheapo MRIs to give them what they want.
My academic background is in history, with a focus on the history of science and medicine, and it's an excellent foundation for optimism.
I am really curious to find out who "Dr. House without the attitude" is. Mind sharing?
If someone thinks they may have some of these infections, I would be happy to refer them privately to doctors I'm familiar with that treat them...or to organizations that can provide assistance. Otherwise, I don't want to bring any doctors unwanted attention.
TL;DR: Read the poor guy's story and show some sympathy! :)
edit: Before I get downvoted because of emotional responses I want to clarify that I really have no idea who Shooter is and neither do I know about the relevance for this site.
Is it really that hard to read the second line on the page?
Specifically the name of the person submitting the story?
Or maybe search for the word Shooter on this page?
I also did not know who it was, but it wasn't that hard to find out.
Because if it's the first, that was not obvious at all.
If it's the first I also don't know, but did not attempt to find out (does it matter?)
It's just a guy sharing his story because he was asked about it on another thread. Does knowing who he is change much? (i.e. if he's some super famous guy does he get more sympathy ;))
http://en.wikipedia.org/wiki/Everyman
Nobodies dont speak up about their experiences.
A tragi-comedy in three acts. Starring 'Shooter', a nobody:
Act I. Extreme Pain (many symptoms, unexplained.)
Act II. Going Insane (frustrating quest for answers, all in vain?)
Act III. Bugs in Brain (correct diagnosis. treatment. dragon slain?)
I'm not sure if there's an easy systemic solution to this problem. Somehow, doctors need to get in to the habit of thinking and looking at the whole picture. There's also a tendency for doctors to not listen to patients, which is exacerbated by a tendency for patients to lie.
[0] The major symptom is menorrhagia, and the successful treatment was nafarelin, a GNRH agonist. This appears as a standard treatment on websites updated this year, but I could find no information about its use for that purpose in 2007.
I've thought it would be difficult to become a good doctor because the turnaround time between tests is long, you don't know if patients are lying to you, and if you're not working properly then your patients won't come back so you lose your feedback loop. This clashes with the hacker experience where the turnaround time for problem solving is often very rapid, and the problem sticks to your desk until you've solved it. Unlike with hacking, you have no opportunity to improve the system to make it easier to diagnose future problems with.
I love the show 'House' because I identify with all the ways he works - leonine work habits, putting career interest ahead of body, largely unsuccessful attempts to modify energy levels with caffeine and alcohol, deliberately breaking things to see what happens, lupus ("It could be a threading bug!"), difficulty relating to normal people who don't orient around career obsession. I've fallen in love with supporting clients through API integration because it has a whole social dynamic that adds to the complexity. As with patients - when the other side tell you they've done something how can you be sure? "Everybody lies" / "Trust but verify".
1) call your Congressperson's local office (not DC) and ask for someone in constituent services who works with health care issues. Do this tomorrow. If your insurance company is denying you any care, and you have a paper trail, they should help. If your Rep can't help, then contact your two Senators' offices. Generally, Reps are much better with this sort of constituent service.
2) call your local Fox affiliate and tell them your story. (November sweeps are coming up, and this is a perfect post-House nighttime news story).
3) put up a web page that has your story, pictures, and easily found contact information for the follow up press stories that will occur.
This is your best path to making sure you don't get denied coverage from your insurance company (and it's amazing they haven't found a way to drop you yet) for the benefits that you are entitled to.
Or is it just the norm and Im not used to it?
Changing to a public plan isn't going to make it better (since they will still be trying to control costs by not treating unnecessary things).
The one thing that will make it better is more integration, but then you have people complaining that the insurance companies are telling doctors what to do.
There is no perfect way to both: control costs by challenging doctors on what they bill, and at the same time not making it hard for people to get the services they need.
I wasnt directly suggesting it was reason to support a public plan btw. Just that it sounds pretty stinky.
I also would add that I think you've got the wrong "problem".
control costs by challenging doctors on what they bill, and at the same time not making it hard for people to get the services they need
Is never an issue over here [UK] (not just because of the public aspect).
Could a doctor in the UK prescribe an experimental treatment? Could he prescribe it and get insurance to pay for it? I bet not without a fight.
Perhaps the difference is that there, the fight is behind the scenes so the patient never knows about it (if it's rejected I bet the doctor never even mentions it as a possible treatment).
In the US the insurance belongs to the patient, so it's the patients job to handle them (with help). In the UK it's not so.
Yes, because insurance doesn't pay for it. You can get experimental treatment on the NHS - I think it is a little more of a hoop to jump through and depends on the actual hospital your at (for example most will insist other forms of medicine have been tried first).
Here doctors are a lot less litigatable as individuals; I think that is the main reason health care is better here. Without frivolous lawsuits and insurance companies breathing down their necks.
The problem is that in the US at this time, health insurance companies are structurally evil. Evil in that they are the source of unnecessary pain, suffering and death. That they cause this suffering in the name of their 'fiduciary responsibility' to their shareholders only compounds the evil.
Saying the insurance companies are evil is no more informed than the people who railed at the Obama administration for suggesting that end of life care should be rationed.
The most fundamental issue is that health-care is so damned expensive in the US. That's why we get in the degenerate situation we're in now where it seems like insurance companies are the arbiters of who shall live and who shall die.
The structure of health insurance protection in the US at this time extracts almost a third of every dollar spent on health care. And those administrative costs do not contribute towards better health care, chronic or acute. And that is why I am not afraid to make a moral judgment; an industry that steals the third part of the money entrusted to it's care at the expense of the sick and dying is evil. How can we remedy this evil?
The unfortunate second-order effect is that it attracts the wrong kinds of people. They need software to find people most likely to cost them money, and jack up their premiums until they switch. Would you want to write that software? Like, the line of code that says,
See my response below for an elaboration of why I use the term evil in this context. And all of the human beings involved in this system have choices as to how they can react. The fact that some of those choices have costs does not automatically remove the element of choice. The executive who chooses to perpetuate the system in it's current form is making a moral choice and should be held to account for it.
If you want quicker service then you can go private and pay for it.
In terms of experimental treatment I know the NHS may suggest it if they are unable to effectively treat you.
Basically the UK system is the American system (e.g. you can always go private) without the suck (if you're broke you still get fixed, just on a slower timeframe).
We do have this thing called NICE tho'. http://news.bbc.co.uk/1/hi/health/1923989.stm
NICE picks treatments based on trying to get the best results for the whole population whilst only spending a finite amount of money.
Insurance companies pick treatments based on trying to get the largest amount of profit compatible with people being willing to carry on paying for insurance.
NI is pretty cheap and the only kinds of treatments that are going to be prevented are those that are incredibly expensive, experimental or incredibly rare. You can still go private though.
Same sort of scenario for pensions, if you don't save for yourself you will still get a state pension. You will have to live on Tesco value bread even though you "paid taxes your entire life".
The defining line is: If you're a UK resident and you're not wealthy and you don't save any money you WILL be catered for: TO A DEGREE. Sure its not always fair but it has to be pragmatic at the edge cases to work at all.
The UK govt. makes approx GBP 10Bn a year from tobacco, and spends approx. GBP 2Bn on medical costs associated with it.
if you don't save for yourself you will still get a state pension. You will have to live on Tesco value bread even though you "paid taxes your entire life"
The problem I and others have with this is that the person who contributes nothing, by their own free choice, will receive far more than those who have contributed, and saved, and now get nothing due to means testing.
I and others like me have a problem with people like you who do not understand the principle of true charity. No strings attached.
Sure I agree that we need to improve the way we provide some of our benefits, there are probably too many people on incapacity benefit suggesting some (many?) of these are fraudulent cases.
However where we appear to differ is that in principle I have no problem for a single parent or someone else with "problems" being able to claim benefit. I'm happy to have some false positives if we can help positive positives. I'm lucky with my life, other people need a hand. It is not my place to morally assert how they should lead their lives.
I'm also puzzled how you think means testing is unfair. Those who have, have. Those who haven't get given. Do you appreciate what would happen to crime figures if the dole was abolished?
True charity doesn't involve coercing the donor - and the donor is free to switch their donation to another charity that does a better job!
I'm also puzzled how you think means testing is unfair
Because it punishes those who do the right thing: work hard, pay your taxes, save what you can, get nothing. And yet those (note that I said this in my earlier comment - you seem to have overlooked that rather crucial qualifier) choose not to contribute, get everything handed to them on a silver platter.
It's easy enough to implement this: anyone who leaves their free education without some qualifications needs to work for X years before they are entitled to anything further from the taxpayer.
Those who have, have
Ermm, no, those who work hard, earn. Those who don't, take.
The tests were not even intended for this diagnostic purpose by the CDC, but they are being used that way by insurance companies in order to exclude people from treatment. The tests are meant to be used for statistical tracking purposes only. Oh, and some of the people that are fighting long-term treatment and the development and acceptance of new tests are the very people that hold the patents on the existing tests. There are already more accurate tests available, but insurance companies will simply not accept them.
In the US you are completely on your own, and your insurance company is not your friend; no matter how dutiful you were in paying your premiums. If you have a chronic, treatable condition, expect to fight it out with your insurance company 2 to 3 times a year over whether or not they will live up to their contractual obligations.
It is my considered opinion that if Obama wanted to lever the healthcare debate around to actual change, the only tool he would need are the RICO statutes. And I don't think his prosecutors would find it difficult to bring cases.
Well I did because I was over there a few weeks ago visiting my cousin and she ranted about it - but she is a super-hardline liberal so I obviously took her comments with care (bit of truth, bit of OTT). Sounds like she might have been spot on!
</sarcasm>
In short, turn insurance back into insurance (protection against low probability, high cost events).
What you're really looking for is getting insurance out of covering expected medical expenses, but the problem is that doctors and hospital charge higher prices to the uninsured. I had a medical bill once that was denied by insurance, and the hospital wanted something like $12,000. Later we got the insurance to pay, and the hospital only charged them $2,000 or so.
A related problem is that the tax code favors insurance companies by providing a tax break to employers, which is why most Americans get insurance through their employer.
I pay twice as much for my insurance as I would for identical coverage from the HMO branch of the same insurer, simply to make it harder for them to deny payment. This is totally worth it, but not everyone can afford to do this. I still have to fight them at least two or three times a year over coverage of something.
It wouldn't be so bad if this wasn't the norm. Every time I visit the dentist or doctor, something comes up from insurance. Then I waste a week or a month fighting the insurance company for the most inane things.
Now imagine if you couldn't speak English or didn't have the time to make these calls.
I mean you can understand fuss and screw ups with expensive, complex or unique treatments. But when you have a faff just to go for a dental check up.....
Here I book my appointment, turn up, get 10 minutes or so check up and polish and then pay £16. No fuss or drama.
If you need to go back within the month it is free (on the £16 payment) too. Bargain.
I'm more of a behind-the-scenes type person. I have worked in trying to get legislation passed on these issues, and I've donated time and money to some of the organizations that try to help (legal defense funds for physicians, research studies, physician education grants, public education and outreach, etc.)
My insurance company has tried to drop me, BTW, repeatedly. It's a constant battle. My wife, fortunately, is a Director at a major research hospital and she has a great deal of experience in battling insurance companies. And I'm very fortunate in being able to cover the cost of what they will not cover, at least for now. Many are not so lucky. Some states have enacted legislation to force insurers to meet minimum standards for these diseases, but most states let insurers get away with writing people off or even making it impossible for people to get diagnosed initially.
Holy cow, you're fortunate (all things considered).
One of the people that was very helpful to me in finding treatment (and her sister) are in the documentary I mention, for example, and she died from Lyme complications after filming because she was denied adequate treatment for so long. I know others that have died due to Lyme and associated vector-borne diseases. (A celebrity reference for the HN crowd: Mary McDonnell of Donnie Darko and Battlestar Galactica is an activist in fighting Lyme and associated tick diseases that I occasionally see because she had a family member die of Lyme.) In sum, people are dying - and wishing they could die - because of these diseases, so I also wanted to address other actions I have taken and that others can also take.
That's a very unique position of power, whether you think so or not. You have the ability to affect great change, especially with what's happening with health care in the U.S. right now. You -apparently- have some money (at least more than I do), connections, an amazing story and anger, a great motivator.
I think everyone can understand if you can't, or you won't, but if it's in you, step up, pull strings, work behind the scenes, work in the spotlight, tell your story, influence who you can and get this fixed. This is still the greatest country in the world, and the ability for citizens to step up and fix what's broken is what makes it great.
That's just my two cents, for what it's worth. And my apologies for the semi-patriotic rant at the end there. ;) I wish you the best as you continue this battle.
Sorry if this was just a partisan joke and I missed the humor.
Perhaps this is related to what marze said, but based on your experience it sounds like you looked into some CAM approaches (especially from the documentary you mentioned). If you don't mind sharing this with us, I am curious to know if the doctor who came up with the correct diagnosis would fall under this category? Also, your experience with all the different doctors with their own specialties reminded me of functional medicine, an alternative approach. (For anyone who is not aware, "Functional medicine reflects a systems biology approach because it includes an analysis of how all components of the human biological system interact functionally with the environment over time. The Institute for Functional Medicine contrasts this approach with an organ system biology broken down into modern medical specialties.")
Best of luck to you, and I'm glad you now at least know what the problem is. Not knowing why this was all happening must have made it even worse.
I had to Google "CAM" because I wasn't familiar with the acronym off the top of my head. The diagnosing physician was definitely a member of IFM...I distinctly remember a certificate on his wall from them for something. In retrospect, the IFM-affiliated doctors and the DOs were all more compassionate and slightly more helpful than most of the 'traditional' MDs. I guess because they emphasize the more holistic approach/perspective, which is what was needed. The diagnosing doctor was not a New Age-y, 'alternative' type doctor, though, in the way people normally categorize them. Too much touchy-feely, pseudo-scientific stuff makes me nervous.
The documentary I mention mainly contrasts those who believe in chronic Lyme and long-term antibiotic treatment with those that do not. There is one doctor, mentioned fairly briefly, that is what I would call normally call an 'alternative' doctor as it has come to be described in the common vernacular. Long-term antibiotics, while controversial, are not really an 'alternative' treatment as I commonly think of it...? It's a controversial application of a traditional treatment. (Even though, frustratingly, they are happily used for longer periods for things like acne without the outrage.) Maybe I'm reading too much into the word 'alternative' - it's become a fairly loaded term. In any case, I do like a more comprehensive approach and am glad I found it. Otherwise, I'm sure I would still be very ill.
Yes, not knowing what I had was definitely one of the worst parts of the whole thing.
Compared to western medicine, where focus is on attacking the infection and thereby causing other ailments, Ayurveda treatment will help to keep the balance of the system, which would be more comfortable.
Just give a thought on it. In this part of the world, there are lot of cases that were miraculously cured through Ayurvedic treatment.
Hope you will get better soon!
As someone who has gone thru the whole onslaught of visiting several doctors for my sciatica plus degenerating lumbar discs - I was told by many doctors in the US that I am at the risk of being paralyzed . To put it mildly, I was scared. I then went for 2 months to India(kerala) where they diagnosed my problem as something that was the result of digestive problems. I had no faith in the daily treatment; I questioned the rationale of what they were doing(eg- enema with herbs and medical oil) to morning-medical-castor-oil treatments. But after 2 weeks, I was not limping.After 3 months, I was walking normal as anyone. At the end, I was told by the ayurvedic doctors that any more chemicals(by that they meant allopathic medicine) and my body would have made slower progress.
I also went thru the insurance drama- doctor 'adviced' me to take an x-ray so not to get into insurance troubles. So a whole 2 weeks later - I get my mri to know which of my discs have problem. There was this pain specialist who was so eager to take me 'once more' to the operation theatre to chip out a part around the disc(which he did twice). The nerve specialist was another story - interested in my occupation and annual salary over my pain.
I didn't really understand half of what you wrote because I don't have a medical background and I don't think watching House now and again qualifies me to have an opinion. With that said, I did want to comment on your last paragraph regarding having your first child... My partner was born with mild cerebral palsy, has major balance issues and little to no temperature sense. I'm 35w2d pregnant with our first and he's already had comments (right down to "I didn't know people like you could have kids") on his ability to raise children. My point being - you're not alone. There will always be doubters. Please don't let those people, however nice their intentions, get in the way of what should be an amazing experience for you and your wife.
On that note, congratulations & good luck :)
For hacker news -- this is actually a perfectly reasonable amount of information to provide.
Having worked in many facets of systems engineering (in addition to an eye-opening stint in tech support) I can see many analogies between the medical diagnosis you had to obtain and computer diagnostics.
Just like medicine, a lot of computer problems aren't even diagnosed. A computer reboot is the way of fixing some problems without bothering to diagnose them, like antibiotics.
Generally, a hard computer bug getting fixed happens best if -- a LOT of people encounter it OR someone takes a personal interest in the problem OR there is meticulous documentation that makes it easy to pinpoint what is happening.
People don't notice that this is the same in the medical profession. You helped yourself by carefully documenting what happened, and I believe that's what helped you in the end.
All the best to you (and congratulations on fatherhood!)
It's a shame about the insurance companies.
I wish you the best of recovery in the near future. Thank you for sharing this story.
Public health care is sorely needed in the US IMHO. Whilst it doesn't magically mean everyone gets expensive treatments, at least it takes away some of the problems. The last thing you want to do when sick is have to deal with money/insurance.
Really hope things get better for you, and enjoy the new baby!
On another issue - research on 811 raw vegan or juice feasting. Nutrition can have a great impact on your body and you can support your immune system by feeding your body nutritious meals instead of burdening it with hard to digest cooked food.
Check out bee pollen and raw honey. From personal experience I can tell you that 10 days of 2 to 3 liters of apple and carrot juice a day really improved my energy levels.
You already have a correct diagnosis. You sort of know what needs to be done and only need docs qualified but unafraid to do it and cheaper meds. You might be surprised how comparatively cheap all that can be outside US and the local laws in other countries might mean that the docs there don't have to worry about treating you there like they have to in the US. (Anecdote: A friend of mine once calculated that despite what the insurance covered for him, if he had come to Bombay and gotten treatment at the best facilities staying in a 3 star hotel all the while, it would have cost him less and he would have received way better treatment from more qualified docs.)
Good luck to you. Hope you get well soon.
Another possible advice is to limit carbohydrates (partually replacing them with fats). There is a whole host of possible problems from excess carbohydrates (starting from diabetes, high blood pressure and overweight).
I too have had problems with lazy, blinkered, doctors and "recurring" multi-faceted infections, but my experience is a cakewalk compared to yours.
I wish you the best, and applaud your strength (and your wife's), and thank you for sharing your story.
Oh, and one potential tip... have you checked out the public plan in states like Maryland? AFAIK, Maryland is one of the few states with good public plans. They aren't cheap (the best one costs almost $300/mo for an individual), but from my experience, they cover EVERYTHING. A broke friend of mine got on the plan for 2 mos to get his hernia fixed (he was 25! nobody would cover him, even if he had the money), and they fixed it. No pre-existing condition BS.
The only thing you have to have to qualify is being denied coverage in the past 6 mos. You may qualify, based on what your insurance co. is doing to you. Certainly if you applied for other coverage, they would deny you.
I hope you are able to continue recovering and that you don't have to deal with too much more bureacratic bullshit.