**TL;DR been to a few different specialist clinics for symptoms and nobody seems to be able to do much to help so far**
**(also for the avoidance of doubt – there’s no language barrier, I can and have explained all my symptoms in detail in Japanese)**
Basically for going on about 9 months now, I’ve been having a sore throat, stiffness in the neck, and what are apparently called “fine crackles” when I breathe lying down (sounds a bit like Rice Crispies when you poor milk on them).
So far I:
1. have had STD tests done just in case – all clear (I thought it might be some sort of dormant chlamydia pneumonia.. apparently not).
2. went to ENT specialist, who checked my nose and throat with one of those camera things, apparently nothing out of the ordinary.
3. went to two respiratory specialists, neither of which found problems indicating anything serious (or anything wrong at all for that matter) after chest X-rays, CT scan, breathing tests, and bloodwork.
4. Also had an ultrasound (eco gun thing with slime whatever) on my neck which didn’t show anything.
**The weird thing is** that while they have all been perfectly happy to *prescribe something* because it might be X Y or Z, none of the doctors seem to be particularly interested in actually hearing the sound for themselves. I did make a recording on my phone (literally just holding it next to my open mouth at night).
I don’t sense any desire from them whatsoever to actually get to the bottom of what the problem is. From my own googling, “fine crackles” are almost always a sign of something potentially serious.
I was thinking something like having me stay over one night at a hospital for them to monitor my heart rate, breathing patterns etc so that they can first-hand hear what the sound is and exactly where it’s coming from inside my lungs (presuming it’s my lungs and presuming there’s equipment that can do that).
I also remember that after I went back to the first respiratory specialist and declined their offer of more (different) medicine despite them not carrying out any additional tests at all and seemingly just guessing (or wanting to prescribe something to check a box and get their fee?), the doctor looked sort of confused/annoyed as if it was all my fault (lol gtfo). I thought my position of “I’d rather not be prescribed anything else until we find out what the problem actually is” was reasonable. Plus, this is partly because the aformentioned ENT specialist found no issues and then proceeded to prescribe me a bunch of kanpo (herbal medicine), which I should’ve declined on the spot but felt too awkward to do at the time.
**My question is..**
How do I go about nudging a doctor in the direction of further testing even if not at their clinic? I totally understand if a doctor/clinic has already exhausted all the means available to them, but I don’t understand the whole “*hmmm well, しょうがない、 if it’s not X Y or Z, I don’t know… here’s some medicine that probably won’t work, see you in 2 weeks*” approach just to keep me coming back.
Surely they should be at least referring me to some other specialist? Or am I the one doing “it” wrong?
Back in my home country (the UK), you’d typically have to wait weeks (or worse) to see your local GP but (in my own experience) they would be very thorough and refer you to a specialist if they couldn’t work out the issue themselves, so I’ve never really felt the need/urge to say something like “*wait OK so…. what’s the actual plan here? just keep prescribing medicines like throwing shit at the wall until it sticks?*”
Here in Japan, it’s of course great that I can access clinics and doctors very quickly and I don’t mind the co-payment (getting seen the same day at a clinic in the UK is just not a “thing” unfortunately), but I’m starting to think “what’s the point of having easy access if they turn out to be unhelpful for anything that isn’t minor?
I would appreciate any advice and would love to hear people’s experiences in terms of getting something diagnosed that isn’t as simple as a cold, the flu, a stomach bug etc.
17 comments
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I’m in a similar situation. I’m curious about other’s experiences and advice.
You start going to different clinics. Be kinda annoying. Don’t be rude but don’t just listen. Need to tell them what you want to do.
I’ve also said , “with this symptom why didn’t you test this! That? Or do this test”
More specialized clinic.
Had one doctor give me the wrong antibiotics.
Went to a different doctor and he was like “those don’t do anything for this sickness”
If you don’t like the results.
Go to a different one.
It’s great having health care but damn. It’s such hit or miss
Japan is good for basic shit but anything out of the ordinary will get ignored or misdiagnosed. I’d recommend going back to your country for a proper diagnosis.
Go with a Japanese person, that is able to explain everything in detail to the doctor.
Hi, random person who started having issues around the same time as me and has also been pulled around by pretty much every doctor they’ve seen. No, seriously. I’ve been to GPs, cardiologists, ENTs, orthopedists, dentists, neurologists, psychiatrists, therapists, gastroenterologists… I think at this point, the only doctors I haven’t seen are rheumatologists. I’ve even been to osteopathy, massage, acupuncture, seitai, chiropractor…
If you haven’t been yet, look for a hospital that has a 総合診療科 which is basically a department that people go to when they have no idea what the hell is wrong with them. Not many hospitals have this, so you’ll have to actively seek them out. You should also have a file with your full medical history and what tests you’ve already run. I personally have a folder that I obsessively organize about once a month with my entire medical history down to when I was in elementary school. That can help save time.
But if that also fails you, which it could because it failed me, you’ll just have to be really persistent to the point of annoyance. Put that stubbornness into finding a GP who will listen and run or refer you to get tests that you want done. All you really need is just one doctor to get that ball rolling…
By the way. Another quick suggestion? Go get your neck checked. I notice you haven’t seen an orthopedic doctor, so you probably haven’t gotten your neck checked. If you’re hearing crackles but only at a certain position and you have a sore throat and stiff neck, I’d think: ears, throat, neck. I might even get a thyroid test.
And, this is a super rare case so this probably isn’t it, but if everything else fails, go get checked for something called Eagle Syndrome at the dentist’s. I just say that because that’s one possible diagnosis for me, as I actually have the main thing that causes the syndrome, but I’m exploring all other avenues first as the only way to truly tell if this is the main cause is through surgery, which is very difficult as less than 3% of the population has the main factor and of those, less than 3% show the actual symptoms of the syndrome, which means big famous hospitals maybe only do 1 surgery for this in an entire year, maybe even 2. But symptoms you pointed out have been seen in people with this issue.
At this point it might be worth paying the fee or getting a referral to be seen at a university hospital, because as someone else suggested if one department doesn’t know what’s wrong or you are a complicated case they will discuss with other departments. In my professional experience University of Tokyo, Juntendo University, Japan Medical University, and Osaka University have very knowledgeable doctors. As a patient, University of Tokyo diagnosed and is treating my rare condition and the doctors always listen to my concerns and consider anything I ask for.
However, if you have had a negative chest X-ray and a negative chest CT, I would consider having your jaw or throat anatomy looked at instead as it is pretty unlikely to be your lungs at that point. A head and neck CT to rule out any other visible issue, would be on my list if I was treating you.
Edit: In case this isn’t clear for anyone, to get a referral you just *ask*. Since you pay them to write the letter there is almost no doctor who will refuse to do this.
Go to a university hospital.
You’ll probably have to repeat all the doctors and many tests, but they will be more thorough than any clinic.
P.S. try xyz meds is actually a reasonable approach… statistically. That’s why they follow it.
Honestly the healthcare here causes me extreme anxiety. It’s probably the language barrier, but I just haven’t been comfortable with any doctors here yet. Always feel like they’re not listening to me or don’t really know the answer. It’ll probably cause me to leave Japan as I get older. Sorry that’s not helpful to your question OP. I do know from experience though that St Luke’s has a comprehensive physical check up program that includes the option of an overnight stay where they monitor you while you’re sleeping.
Hi! I had something similar, luckily ‘only’ for six months. I had done all the tests as well – mri, echo, x-ray, camera and have been to several hospitals.
In the end it was acupuncture that saved me. Have you looked into this direction? I can highly recommend you visiting Edward in Sangenjaya.
I have the same exact issue with clinics nearby. I have been having persistent coughing for the past year or so, no fever no nothing just coughs. ENT clinic face me a 2wk cough medicine and told me to go to a respiratory clinic. Respiratory clinic did some tests and said it’s light asthma. Did 3 months of asthma medication with zero effects, didn’t even cause anything when I stopped taking them. Another ENT said I’m lying. Tried going to a university hospital but the lines are so atrocious. Feels like a waste of PTO if I have to take a day off work.
Tried sleeping with a snood on your neck?
Japanese doctors are only useful for writing prescriptions, after YOU tell THEM what you have and what procedures/medicines you need to diagnose/treat it.
I gave up on them long ago after finding an excellent non-Japanese doctor in Fukuoka.
My advice is simple go directly to the specialist doctor at the hospital. Miss out the clinic GP style visit like you would back home it isn’t necessary.
Also once you find a hospital you like and can trust to with them and go back and see them again it you are still having trouble. It’s a completely normal medical practice for doctors to monitor something, they cant always understand a problem straight away despite all the tests available, they may well give you some medicine that doesn’t work but then go back and work together.
Finally I would stop googling, every symptom is serious on Google. Once you find your doctor trust them and not Google. It also sounds like you have had many proper tests done with nothing showing so it could also be worth thinking about whether you are experiencing health anxiety. I don’t say this to be mean I’ve also had this in the past myself.
My experience with “doctors” here has been horrendous. Clinics, specialists, big hospitals, university hospitals – all the same garbage. A good acupuncturist did more for me than any of the idiot “doctors” and actually recommended I see a specialist for X when needed.
Just remove every mole on your body like I do, save up some cash throughout the year, and attack each one.
It’s like 10,000 yen for each mole at a specialized place that deals with clients on the daily.
A few years ago I had an inguinal hernia and three separate hospitals told me to just use my hand to push it back in whenever it started to hurt. Those three hospitals had no interest in knowing how severely it affected my work (teaching fitness). So it’s different than your situation but not wanting to hear the recording, etc reminded me of this.
Then I went to a university hospital and they were like “yup, let’s do some surgery”
University hospitals seem to be much more in tune to situations.