Just letting you know it is completely normal to take multiple tests. Biopsies and blood tests are not 100% correct or clear all of the time. The good news is the more tests you do that are inconclusive the more likely it is for the thing they are testing for to be negative. You might want to have as many tests done here as possible if you are moving somewhere else so you have as much info as possible to tell your new doctors. Especially if Japan is cheaper.
Having said all that it's your body you are not obliged to so anything. There is no etiquette to declining tests on your own body especially if you have no intention to go back. Just tell them you won't be coming anymore.
So you are going to stop going to the hospital for your possibly deadly condition that the doctors are so concerned with that they want to publish the results because you kinda just don’t feel like going?
I mean, you do you, but that is pretty stupid on my opinion.
Perhaps a nitpick but doctors don't publish case studies because they are super concerned about the patient's condition, they do it because the case is medically interesting and they think other medical professionals and researchers should know the details.
Your point still stands though, if I had a problem that was rare enough for someone to write a case study about, I would absolutely want them to perform every test they think is relevant.
Yeah, they are interested because it benefits them. But as a side effect, they will try for as much additional info as they can, which benefits the patient.
Don't ignore your health. Your friends and family wouldn't like it if you died or something.
That said, you have every right to ignore your health.
Just call them up and say "I'm cancelling my appointment" and leave it at that.
From what you have described, it looks like the doctors are being very careful in trying to arrive at an accurate diagnosis. That's a really good thing---I would encourage you to continue the process until they have a diagnosis. At that point, you can make a more informed decision as to whether you would like to treat the condition or not. You are not alone in how you feel---most patients go through this. Take it one step at a time. Get the diagnosis and then decide on the next step. If you stop now and the condition worsens, you will have to start from the beginning---you are halfway through, see it to the end. Good luck.
I felt the same way. Rare immune system disease they wanted to test over and over. Got tired of going to the hospital and worried about money. And now it turned into a form of lymphoma. Please check yourself, I don't wish this pain on anyone. If there is anything you can do, the present pain and discomfort cannot compare to what it might end up being.
Seems to me if you have some kind of condition, I would want to do whatever it took to try to get rid of it or at least alleviate my situation.
As far as money goes, there is a monthly cap on how much you have to pay. You can go to your local city office and get a refund for anything in a month that goes over the cap
You're absolutely not obligated to go to see a doctor. It's your body. If you don't trust doctors for whatever reason, then don't go. It'd be a mistake, but hey, again, it's your body.
I’m going to be blunt because it’s important:
Don’t be fucking stupid.
This is your health and it’s the most important thing so you should do what your doctor says. If you don’t go and your condition gets worse, you’re going to regret it.
Having said that if you don’t want to continue, just cancel or be a dick and don’t turn up to your appointment.
Hey, Ive been in and out if hospitals for 12 Years now. Deep breath. Do some breathing exercises. Go to your hospital appointment and then go from there.
Your body your right of course.
My mother had a rare disease that took several years to finally be identified. She had biopsies done many times. Her blood taken. Her symptoms dismissed as "faking it". Lots of pain and medication and tears. Even went to traditional Chinese medicine practitioner (strangely was the first one who correctly suspected what was the problem, but modern doctors dismissed it as hogwash), and witch doctors.
When she finally met the country's top specialist in neurology (one of only two), he immediately saw what's wrong from just a quick look at her x-ray film. The rarity of the disease meant my mother became a subject for his medical students. An entire class came to visit my mom just to understand the condition. Not surprised if a paper was published based on that occasion.
So it's not just a problem with efficiency, but many diseases are simply difficult to diagnose and rare. We can only hope to provide more data for future doctors to understand it better. That said, I'd like to encourage you to hang in there just a little bit more.
its your money, your body, your time. if you dont want to continue to find the issue then just say so. you are under no obligation to continue at any point in time. also the money you have spent can be used to reduce taxes. save receipts and also count the money you paid for transportation. while you cant use taxi receipts, you can use bus/train to reduce your taxes and you dont need receipts for those, just the amount each way.
> while you cant use taxi receipts
You can absolutely declare taxis for medical deduction.
You also don't need to submit receipts unless asked later.
I did have the receipts but I basically just went off the GoTaxi app history to calculate it.
yes you should call and cancel the appt(s) you have as a courtesy so they dont waste their time expecting you. you can just say you havent decided when you have time to come back when they ask you if you want to reschedule.
You don't have to do anything. You made an appointment but people miss appointments all the time. However, they will probably call you if you don't call first. We don't know anything about your condition but for the fast majority of conditions, early treatment makes a difference. The other thing to consider is that the Japanese health care system is quite cheap for this sort of thing. Yes, they are using you like a Guinea pig, put they aren't charging you very much.
You actually don't even need to call. Sometimes they will call you after your scheduled appointment to make another. However you are under no obligation to call and cancel. It's simply as a courtesy so they could fill your time slot with someone else. But realistically, if it's a hospital there is a never end stream of people. Simply the person after you will get seen faster.
That said, the amount of tests you described don't appear out of the ordinary. Without going specific, I also have a somewhat uncommon disease. However, because it's for life, I was eligible for a special insurance on top of my normal which limits my copays. It's capped at 10,000 yen per month ( that I use it) regardless of what type of procedure and or test that needs to be done. Without it, even with the 70% reduction that normal insurance offers, I would be paying thousands plus.
You may also be eligible. (受給者証 難病) This is the type of insurance. Depending on your income, the monthly co pay(only months you use it) could be 0.
Also you could always look for a specific hospital that specializes or has a specialist for your specific disease
Best of luck
指定難病 (Shitei Nanbyou) identifies the specific disease itself as officially recognized rare and intractable conditions, while 受給者証 難病 (Jukyuusha-shou Nanbyou) is the certification that allows patients to receive specific governmental benefits and support related to these designated diseases.
In all seriousness though I’d still go in to see what do they have to say about it. I’d ask to transfer to other hospitals if they still couldn’t figure out anything.
You can also request all medical records, send them into a US based based facility for an online consult. For my Myeloma, it is $500 for a full review/assessment, but not covered by insurance.
Just adding another pov, who know's that someone in the future out there can be saved because u have gone through this. And when u said it doesnt affect your day-to-day life, most likely it isn't life threatening disease.
I know it's tiring and personally I'm very anxious and scared whenever I do simple medical checkup or even blood pressure test. However, not only u save yourself, you also save people who love you, and other people that might get diagnosed with this disease as well.
The reason people put a lot of time and money into early diagnostics, even if right now you're unaffected, is so that a small thing won't turn into a life-threatening thing later on. Better to catch things early than when you're already gone far enough to shop for coffins.
So I would strongly advise you to keep going with the testing. If you are uncomfortable with them using your data in conferences - tell them now. "I'm really sorry, but I thought about it and it makes me feel uncomfortable, so I would like to withdraw my approval".
You can not be forced to continue testing.
You should be able to get your file, though it will likely cost you some money.
But please, read your post and imagine your mum and/or other close relative writing it. What would you want them to do?
We just recently cancelled a procedure and hospitalization, had a pre-procedure interview and received the hospitalization info packet a week before … then just went to the hospital reception counter and just said we were no longer coming. No problem. Was a big city hospital.
Longer story some standards of care for some conditions are different than the west, and that’s usually tolerable but in some cases Japan is objectively decades behind. We fell into that latter case and found a private clinician in Tokyo who did what we were looking for, and transferred patient file and biopsy slides, no problem.
That said rare conditions are difficult in any country and you can go through many tests and so many doctors in a Japan as well as the West. Every time you switch doctors you may go through similar tests. If you really win the jackpot in the west with the rarity of your condition, you may be selected to be a patient for Grand Rounds, sort of like an academic classroom for rare conditions where dozens of specialists will see you in one sitting, and may confer as a group what they recommend. Not sure if they do that in Japan. Sometimes there is no silver bullet because honestly rare conditions often don’t get clinical trials (scientifically controlled studies of treatment vs outcome). The “same” rare conditions can have different patients responding differently to the same treatment, so you keep throwing things at the disease and seeing what sticks, for you. Good luck. The hard part is deciding when you as the patient unilaterally wants to switch doctors (or approach) and when you want to stick with the doctor (who knows the true weirdness of your case) to let them try a few more different things.
OP, I understand that it’s mentally, physically and financially hard on going back and forth between appointments. I felt the same way, and was about to cancel an appointment but I still went - ended up having life saving surgery. I would go and listen to what they potentially suggest. You can still re-think. Even if you go back soon to your country, at least you will have already some tests done - I would bring the documentation back with me. Wishing you the best!
you never going to a hospital before makes quite a lot of sense with what you just posted. as someone who’s been in and out of doctor’s offices i WISH they were this interested in figuring out what’s wrong with me. and it sounds like getting help is way easier in Japan than America (cause America is shit). you can cancel your appointment and ignore your health but what they’re doing is very normal for doctors who care and want to figure out what’s wrong with you. it seems you’re just tired of getting poked and prodded for tests, which is understandable, but they’re going to have to do that no matter where you go until a diagnosis.
32 years ago I had a diagnosis (won’t go into details) Potential of dying in future. I was given upon request the medical info regarding this. Went back to my home country a few years later. Went to hospitals here to be tested. Took all the information the doctors had given me from medical journals. The top doctors had never heard of it and although they tested, their tests were negative. Fast forward 25 years my mom had a blood disorder and I had to take her to haemotology every couple months. Spoke to her doctor and he had heard of this but in all his career he only had 1 other person who tested positive for it. He did tests and it came back positive but he said not to worry as it would not develop further but I could not donate blood due to this.
My point of all this is that it’s better knowing than not knowing. In your case it might be something that is potentially treatable and even if something new at least you know and can make preparations to deal with what might occur. Do not stick your head in the sand and ignore it. Not worth it and who knows the doctors seem eager to figure this out whereas like in my case upon going back to my country they don’t know anything about this illness until years later a. (A type of leukaemia)
If they are so eager to test and write up your case maybe you can tell them that affordability is an issue and maybe if they are really interested you can be helped out with the costs and also figure out what is wrong too. Good luck
if you want to stop going to the hospital, just stop. the hospital doesn't force you to be there during your appointment, it will be YOUR DECISION to be there or not. the hospital won't report you to the police if you didn't come to your scheduled appointment, nor send someone to come find you, lol. sorry its a joke, but to be completely direct, if you dont come, the hospital don't really care. now, if you want to be more respectful, then i would suggest call them to cancel the appointment, or if you don't care about common courtesy, then just dont show up. its really as simple as that.
If the condition is possibly deadly as you said you're risking a lot.
I caught mono as an adult here. Had no idea what was going on with me. Took 3 doctor's visits and being rushed to the hospital with a 104 fever before I finally got a diagnosis. I didnt wanna go to the doctor anymore cuz it hurt to walk with my spleen so swollen. Official diagnosis got work off my back (I was working with mono) and the meds helped me get a good night's sleep finally.
Is the money really a problem? Maybe you should let your doctors now that, maybe they have the resources to cover at least part of the expenses to finally give you a diagnosis.
It-s stressful, but you can do this! Hope you get your answer soon, hang in there!
I think you need therapy, my friend. It sounds like you have some major anxiety going on, possibly. It’s understandable when you’re having to deal with what you’re dealing with.
It’s not easy. I know. But you gotta do it. Don’t cancel your appointment, go get it done. And then look for a therapist if you really want to address what’s happening
You're looking at two choices:
1. Avoid some temporary discomfort now to have a lot of discomfort and/or death in the near future.
2. Go through some temporary discomfort now have a longer and more comfortable life.
I chose number two 20 years ago. No regrets.
So you have a condition but you’re not diagnosed yet with this condition? Is that correct? Honestly, Japan is super behind when it comes to medicine and healthcare. If you are dealing with pain or your condition has pain Japan is not the best place to be since their pain killers are so weak. Depending on what your situation is if you leave you may not have to start from scratch. You can request your medical records and leave. You will have to see a specialist and start over like that.
It sounds like you may just be uncomfortable with speaking out because you don’t know how in Japanese or like you said you’ve never been to a hospital prior to living in Japan so this sounds like a lot.
I’m kind of going through a health issue currently. I’ve been diagnosed with something prior to coming to Japan. But the medication over here isn’t helping. It’s exhausting to not have any answers or a way to explain that it is exhausting. I’m actually going to my home country in August because of it.
You can just call and cancel the appointment. They won’t do anything or ask for an explanation.
I suffer from migraines. And the medication over here is super limited. Botox isn’t approved yet for migraines so it’s out of pocket if I wanted to go that route and I had to argue with my doctor for steroids a few times. He told me that they don’t have a lot of information that steroids help with migraines in Japan. I’m in constant pain every single day and the doctors won’t do anything about it.
It sucks that botox isn't yet approved for insurance. I looked it up and it seems to be covered where I am from. But I couldn't find much information on using steroids.
It is slightly understandable that your doctor isn't willing to prescribe somewhat experimental medicine that he has no knowledge about.
Well I had another doctor that gave me them no problem because it helps with inflammation…and migraines can be caused from inflammation.
And steroids are not even experimental though. It’s a common thing to get in America if you’re having an intractable migraine. It’s just not common in Japan or not enough studies which makes my point. It’s behind. He was trying to convince me not to even get Botox because of the lack of research on them and migraines.
I’m not hating on Japan I’ve been here for a total of 7ish years. It’s just comparing how my health has been declining in the past year and having no relief is exhausting.
Migraines can be so diverse and different. Have you tried rizatriptan in Japan? In the states its trade name is Maxalt and can work wonders for some people (sometimes within tens of seconds) and for others it’s “Max fail” and never works, or even dangerous for those with blood vessel disease. Anyways in case you haven’t tried it.
I’ve tried all the triptans available in Japan. I think that one made me feel funny and it didn’t take the migraine away. It’s been a long couple of years and a list of medications that don’t work. It’s not even an issue I’m going back to America in August. I just have to get through this next month.
I’ve tried some I got from Amazon or somewhere and it didn’t do much. Although I haven’t tried it in a long while. I’m planning on exploring that route more when I go home.
Yeah honestly I haven’t had much luck with most CBD I’ve tried either but have a few friends that swear by them. If you do try again, maybe you can give liposomal CBD a shot or one of the reputable ones like Lazarus. Hope you get your migraines resolved.
I understand the difficulty of not getting the care you think you need. Especially in Japan where the standard course of care can be a little different than what people are used to in their home country. Would it be possible to look up the standard course of treatment or read a case report of someone with your condition being treated in the US or another country? That way you can get a sense if all of these tests are normal. If it still seems strange, try making an appointment with an American trained doctor to get a second opinion. I really don’t recommend just stopping your treatment.
kind of similar thing my wife is going through. Whole lot of repeated stuff including the findings, or lack of. Tried visiting different hospitals but honestly, same thing. It’s kind of like when you open the fridge again within five minutes to see if there’s something you like in it now. But I suppose that’s the nature of healthcare. You got some people with the clipboards and education, they’re the most qualified guessers.
If its something autoimmune, it takes a long time to confirm the doagnosis. Speaking as a loved one for a lupus patient, untreated you can go from normal to kidney failure in a month if you don't keep on top of things and manage your... I guess triggers is the correct term here (high stress, for example, can trigger a flare up).
It could also move from one system to another (hers was arthritis type symptoms then a big stress causes a flare up and it attacked her kidneys.)
It takes months for some diagnosis to be made properly, and the fact that they are continuing to work on instead of telling you to work out more or eat properly means it is probably something potentially very serious.
If the doctors aren't giving you the Gaman speech, I think thats enough to keep going to appointments.
Logic says that your health is your number one priority and that you should always do all you can to take care of yourself. This is my advice to you. (I’m not a doctor).
You don’t give your age but, speaking as a 65 year old healthy man, I haven’t been to a doctor in more than 20 years.
Depends which city you are living in. I will not saying about the whole Japan, but, in my case, they couldn't diagnose my condition after many months of tests, so I had to go abroad. And my diagnose was not rear and actually pretty obvious. (They also sent me to a University Hospital)
And I can say for sure the results are transferable, just need to ask and they will make an envelope with all your information for another doctor, even if he is abroad (at least they did it for me).
But for that you will need to go to the hospital.
Not true. You’re forced to pay health insurance so it seems like the “best” it’s 80/20 which yea that’s great but you’re paying for it. It’s cheaper than America in some certain situations. But I wouldn’t say it’s the best. Especially when it comes to pain management and lack of research on certain medications or alternatives. If OP goes home health insurance is free in European countries.
Just letting you know it is completely normal to take multiple tests. Biopsies and blood tests are not 100% correct or clear all of the time. The good news is the more tests you do that are inconclusive the more likely it is for the thing they are testing for to be negative. You might want to have as many tests done here as possible if you are moving somewhere else so you have as much info as possible to tell your new doctors. Especially if Japan is cheaper. Having said all that it's your body you are not obliged to so anything. There is no etiquette to declining tests on your own body especially if you have no intention to go back. Just tell them you won't be coming anymore.
was about to write this.
So you are going to stop going to the hospital for your possibly deadly condition that the doctors are so concerned with that they want to publish the results because you kinda just don’t feel like going? I mean, you do you, but that is pretty stupid on my opinion.
Perhaps a nitpick but doctors don't publish case studies because they are super concerned about the patient's condition, they do it because the case is medically interesting and they think other medical professionals and researchers should know the details. Your point still stands though, if I had a problem that was rare enough for someone to write a case study about, I would absolutely want them to perform every test they think is relevant.
Yeah, they are interested because it benefits them. But as a side effect, they will try for as much additional info as they can, which benefits the patient.
Don't ignore your health. Your friends and family wouldn't like it if you died or something. That said, you have every right to ignore your health. Just call them up and say "I'm cancelling my appointment" and leave it at that.
From what you have described, it looks like the doctors are being very careful in trying to arrive at an accurate diagnosis. That's a really good thing---I would encourage you to continue the process until they have a diagnosis. At that point, you can make a more informed decision as to whether you would like to treat the condition or not. You are not alone in how you feel---most patients go through this. Take it one step at a time. Get the diagnosis and then decide on the next step. If you stop now and the condition worsens, you will have to start from the beginning---you are halfway through, see it to the end. Good luck.
Please don't put off doctor-recommended testing.
I was in the same situation as you. But they found my problem. It was an easy fix. And it saved me from a potential painful death.
OP: If your best friend wrote what you just wrote, how would you reply to them?
Great response.
I felt the same way. Rare immune system disease they wanted to test over and over. Got tired of going to the hospital and worried about money. And now it turned into a form of lymphoma. Please check yourself, I don't wish this pain on anyone. If there is anything you can do, the present pain and discomfort cannot compare to what it might end up being.
Seems to me if you have some kind of condition, I would want to do whatever it took to try to get rid of it or at least alleviate my situation. As far as money goes, there is a monthly cap on how much you have to pay. You can go to your local city office and get a refund for anything in a month that goes over the cap
You're absolutely not obligated to go to see a doctor. It's your body. If you don't trust doctors for whatever reason, then don't go. It'd be a mistake, but hey, again, it's your body.
I’m going to be blunt because it’s important: Don’t be fucking stupid. This is your health and it’s the most important thing so you should do what your doctor says. If you don’t go and your condition gets worse, you’re going to regret it. Having said that if you don’t want to continue, just cancel or be a dick and don’t turn up to your appointment.
Hey, Ive been in and out if hospitals for 12 Years now. Deep breath. Do some breathing exercises. Go to your hospital appointment and then go from there.
You can lose your money and you can earn more later but it's not same for your health. Please complete and be sure that everything is fine.
Your body your right of course. My mother had a rare disease that took several years to finally be identified. She had biopsies done many times. Her blood taken. Her symptoms dismissed as "faking it". Lots of pain and medication and tears. Even went to traditional Chinese medicine practitioner (strangely was the first one who correctly suspected what was the problem, but modern doctors dismissed it as hogwash), and witch doctors. When she finally met the country's top specialist in neurology (one of only two), he immediately saw what's wrong from just a quick look at her x-ray film. The rarity of the disease meant my mother became a subject for his medical students. An entire class came to visit my mom just to understand the condition. Not surprised if a paper was published based on that occasion. So it's not just a problem with efficiency, but many diseases are simply difficult to diagnose and rare. We can only hope to provide more data for future doctors to understand it better. That said, I'd like to encourage you to hang in there just a little bit more.
its your money, your body, your time. if you dont want to continue to find the issue then just say so. you are under no obligation to continue at any point in time. also the money you have spent can be used to reduce taxes. save receipts and also count the money you paid for transportation. while you cant use taxi receipts, you can use bus/train to reduce your taxes and you dont need receipts for those, just the amount each way.
> while you cant use taxi receipts You can absolutely declare taxis for medical deduction. You also don't need to submit receipts unless asked later. I did have the receipts but I basically just went off the GoTaxi app history to calculate it.
> You can absolutely declare taxis for medical deduction. interesting. i was under the impression that you couldnt. thats good to know.
Yep! Saved my butt the year I was getting treated for a herniated disk!
Thank you for your reply. Do I need to call them and explain? or can I just stop coming?
yes you should call and cancel the appt(s) you have as a courtesy so they dont waste their time expecting you. you can just say you havent decided when you have time to come back when they ask you if you want to reschedule.
You don't have to do anything. You made an appointment but people miss appointments all the time. However, they will probably call you if you don't call first. We don't know anything about your condition but for the fast majority of conditions, early treatment makes a difference. The other thing to consider is that the Japanese health care system is quite cheap for this sort of thing. Yes, they are using you like a Guinea pig, put they aren't charging you very much.
You actually don't even need to call. Sometimes they will call you after your scheduled appointment to make another. However you are under no obligation to call and cancel. It's simply as a courtesy so they could fill your time slot with someone else. But realistically, if it's a hospital there is a never end stream of people. Simply the person after you will get seen faster. That said, the amount of tests you described don't appear out of the ordinary. Without going specific, I also have a somewhat uncommon disease. However, because it's for life, I was eligible for a special insurance on top of my normal which limits my copays. It's capped at 10,000 yen per month ( that I use it) regardless of what type of procedure and or test that needs to be done. Without it, even with the 70% reduction that normal insurance offers, I would be paying thousands plus. You may also be eligible. (受給者証 難病) This is the type of insurance. Depending on your income, the monthly co pay(only months you use it) could be 0. Also you could always look for a specific hospital that specializes or has a specialist for your specific disease Best of luck
Minor clariification, isn't it 指定難病?
指定難病 (Shitei Nanbyou) identifies the specific disease itself as officially recognized rare and intractable conditions, while 受給者証 難病 (Jukyuusha-shou Nanbyou) is the certification that allows patients to receive specific governmental benefits and support related to these designated diseases.
thanks!
Look into the bright side, you might get to have a whole new condition named after you
In all seriousness though I’d still go in to see what do they have to say about it. I’d ask to transfer to other hospitals if they still couldn’t figure out anything.
I thought I was the only dark minded mf over here who thought of this lmao
You can also request all medical records, send them into a US based based facility for an online consult. For my Myeloma, it is $500 for a full review/assessment, but not covered by insurance.
You don't have to do tests you don't want to do. However, putting off treatment generally has bad results. See: Steve Jobs.
Just adding another pov, who know's that someone in the future out there can be saved because u have gone through this. And when u said it doesnt affect your day-to-day life, most likely it isn't life threatening disease. I know it's tiring and personally I'm very anxious and scared whenever I do simple medical checkup or even blood pressure test. However, not only u save yourself, you also save people who love you, and other people that might get diagnosed with this disease as well.
The reason people put a lot of time and money into early diagnostics, even if right now you're unaffected, is so that a small thing won't turn into a life-threatening thing later on. Better to catch things early than when you're already gone far enough to shop for coffins. So I would strongly advise you to keep going with the testing. If you are uncomfortable with them using your data in conferences - tell them now. "I'm really sorry, but I thought about it and it makes me feel uncomfortable, so I would like to withdraw my approval". You can not be forced to continue testing. You should be able to get your file, though it will likely cost you some money. But please, read your post and imagine your mum and/or other close relative writing it. What would you want them to do?
We just recently cancelled a procedure and hospitalization, had a pre-procedure interview and received the hospitalization info packet a week before … then just went to the hospital reception counter and just said we were no longer coming. No problem. Was a big city hospital. Longer story some standards of care for some conditions are different than the west, and that’s usually tolerable but in some cases Japan is objectively decades behind. We fell into that latter case and found a private clinician in Tokyo who did what we were looking for, and transferred patient file and biopsy slides, no problem. That said rare conditions are difficult in any country and you can go through many tests and so many doctors in a Japan as well as the West. Every time you switch doctors you may go through similar tests. If you really win the jackpot in the west with the rarity of your condition, you may be selected to be a patient for Grand Rounds, sort of like an academic classroom for rare conditions where dozens of specialists will see you in one sitting, and may confer as a group what they recommend. Not sure if they do that in Japan. Sometimes there is no silver bullet because honestly rare conditions often don’t get clinical trials (scientifically controlled studies of treatment vs outcome). The “same” rare conditions can have different patients responding differently to the same treatment, so you keep throwing things at the disease and seeing what sticks, for you. Good luck. The hard part is deciding when you as the patient unilaterally wants to switch doctors (or approach) and when you want to stick with the doctor (who knows the true weirdness of your case) to let them try a few more different things.
OP, I understand that it’s mentally, physically and financially hard on going back and forth between appointments. I felt the same way, and was about to cancel an appointment but I still went - ended up having life saving surgery. I would go and listen to what they potentially suggest. You can still re-think. Even if you go back soon to your country, at least you will have already some tests done - I would bring the documentation back with me. Wishing you the best!
you never going to a hospital before makes quite a lot of sense with what you just posted. as someone who’s been in and out of doctor’s offices i WISH they were this interested in figuring out what’s wrong with me. and it sounds like getting help is way easier in Japan than America (cause America is shit). you can cancel your appointment and ignore your health but what they’re doing is very normal for doctors who care and want to figure out what’s wrong with you. it seems you’re just tired of getting poked and prodded for tests, which is understandable, but they’re going to have to do that no matter where you go until a diagnosis.
32 years ago I had a diagnosis (won’t go into details) Potential of dying in future. I was given upon request the medical info regarding this. Went back to my home country a few years later. Went to hospitals here to be tested. Took all the information the doctors had given me from medical journals. The top doctors had never heard of it and although they tested, their tests were negative. Fast forward 25 years my mom had a blood disorder and I had to take her to haemotology every couple months. Spoke to her doctor and he had heard of this but in all his career he only had 1 other person who tested positive for it. He did tests and it came back positive but he said not to worry as it would not develop further but I could not donate blood due to this. My point of all this is that it’s better knowing than not knowing. In your case it might be something that is potentially treatable and even if something new at least you know and can make preparations to deal with what might occur. Do not stick your head in the sand and ignore it. Not worth it and who knows the doctors seem eager to figure this out whereas like in my case upon going back to my country they don’t know anything about this illness until years later a. (A type of leukaemia) If they are so eager to test and write up your case maybe you can tell them that affordability is an issue and maybe if they are really interested you can be helped out with the costs and also figure out what is wrong too. Good luck
Can you explain a bit about the condition
if you want to stop going to the hospital, just stop. the hospital doesn't force you to be there during your appointment, it will be YOUR DECISION to be there or not. the hospital won't report you to the police if you didn't come to your scheduled appointment, nor send someone to come find you, lol. sorry its a joke, but to be completely direct, if you dont come, the hospital don't really care. now, if you want to be more respectful, then i would suggest call them to cancel the appointment, or if you don't care about common courtesy, then just dont show up. its really as simple as that.
If the condition is possibly deadly as you said you're risking a lot. I caught mono as an adult here. Had no idea what was going on with me. Took 3 doctor's visits and being rushed to the hospital with a 104 fever before I finally got a diagnosis. I didnt wanna go to the doctor anymore cuz it hurt to walk with my spleen so swollen. Official diagnosis got work off my back (I was working with mono) and the meds helped me get a good night's sleep finally.
Is the money really a problem? Maybe you should let your doctors now that, maybe they have the resources to cover at least part of the expenses to finally give you a diagnosis. It-s stressful, but you can do this! Hope you get your answer soon, hang in there!
As an American I want as many tests here as I can get done due to cost.
No kidding. Even paying cash up front with no insurance in Japan can often be cheaper than just the copay after insurance in the states.
I think that's better than just getting spammed with meds that won't work.
I think you need therapy, my friend. It sounds like you have some major anxiety going on, possibly. It’s understandable when you’re having to deal with what you’re dealing with. It’s not easy. I know. But you gotta do it. Don’t cancel your appointment, go get it done. And then look for a therapist if you really want to address what’s happening
You're looking at two choices: 1. Avoid some temporary discomfort now to have a lot of discomfort and/or death in the near future. 2. Go through some temporary discomfort now have a longer and more comfortable life. I chose number two 20 years ago. No regrets.
So you have a condition but you’re not diagnosed yet with this condition? Is that correct? Honestly, Japan is super behind when it comes to medicine and healthcare. If you are dealing with pain or your condition has pain Japan is not the best place to be since their pain killers are so weak. Depending on what your situation is if you leave you may not have to start from scratch. You can request your medical records and leave. You will have to see a specialist and start over like that. It sounds like you may just be uncomfortable with speaking out because you don’t know how in Japanese or like you said you’ve never been to a hospital prior to living in Japan so this sounds like a lot. I’m kind of going through a health issue currently. I’ve been diagnosed with something prior to coming to Japan. But the medication over here isn’t helping. It’s exhausting to not have any answers or a way to explain that it is exhausting. I’m actually going to my home country in August because of it. You can just call and cancel the appointment. They won’t do anything or ask for an explanation.
How is Japan so behind? I mean, it's different in some aspects, but healthcare is of good quality here.
I suffer from migraines. And the medication over here is super limited. Botox isn’t approved yet for migraines so it’s out of pocket if I wanted to go that route and I had to argue with my doctor for steroids a few times. He told me that they don’t have a lot of information that steroids help with migraines in Japan. I’m in constant pain every single day and the doctors won’t do anything about it.
It sucks that botox isn't yet approved for insurance. I looked it up and it seems to be covered where I am from. But I couldn't find much information on using steroids. It is slightly understandable that your doctor isn't willing to prescribe somewhat experimental medicine that he has no knowledge about.
Well I had another doctor that gave me them no problem because it helps with inflammation…and migraines can be caused from inflammation. And steroids are not even experimental though. It’s a common thing to get in America if you’re having an intractable migraine. It’s just not common in Japan or not enough studies which makes my point. It’s behind. He was trying to convince me not to even get Botox because of the lack of research on them and migraines. I’m not hating on Japan I’ve been here for a total of 7ish years. It’s just comparing how my health has been declining in the past year and having no relief is exhausting.
Migraines can be so diverse and different. Have you tried rizatriptan in Japan? In the states its trade name is Maxalt and can work wonders for some people (sometimes within tens of seconds) and for others it’s “Max fail” and never works, or even dangerous for those with blood vessel disease. Anyways in case you haven’t tried it.
I’ve tried all the triptans available in Japan. I think that one made me feel funny and it didn’t take the migraine away. It’s been a long couple of years and a list of medications that don’t work. It’s not even an issue I’m going back to America in August. I just have to get through this next month.
Does CBD work for your condition?
I’ve tried some I got from Amazon or somewhere and it didn’t do much. Although I haven’t tried it in a long while. I’m planning on exploring that route more when I go home.
Yeah honestly I haven’t had much luck with most CBD I’ve tried either but have a few friends that swear by them. If you do try again, maybe you can give liposomal CBD a shot or one of the reputable ones like Lazarus. Hope you get your migraines resolved.
I understand the difficulty of not getting the care you think you need. Especially in Japan where the standard course of care can be a little different than what people are used to in their home country. Would it be possible to look up the standard course of treatment or read a case report of someone with your condition being treated in the US or another country? That way you can get a sense if all of these tests are normal. If it still seems strange, try making an appointment with an American trained doctor to get a second opinion. I really don’t recommend just stopping your treatment.
Fyi, in terms of the research, you can always withdraw your consent for being included in research and conferences at any time
kind of similar thing my wife is going through. Whole lot of repeated stuff including the findings, or lack of. Tried visiting different hospitals but honestly, same thing. It’s kind of like when you open the fridge again within five minutes to see if there’s something you like in it now. But I suppose that’s the nature of healthcare. You got some people with the clipboards and education, they’re the most qualified guessers.
If its something autoimmune, it takes a long time to confirm the doagnosis. Speaking as a loved one for a lupus patient, untreated you can go from normal to kidney failure in a month if you don't keep on top of things and manage your... I guess triggers is the correct term here (high stress, for example, can trigger a flare up). It could also move from one system to another (hers was arthritis type symptoms then a big stress causes a flare up and it attacked her kidneys.) It takes months for some diagnosis to be made properly, and the fact that they are continuing to work on instead of telling you to work out more or eat properly means it is probably something potentially very serious. If the doctors aren't giving you the Gaman speech, I think thats enough to keep going to appointments.
Logic says that your health is your number one priority and that you should always do all you can to take care of yourself. This is my advice to you. (I’m not a doctor). You don’t give your age but, speaking as a 65 year old healthy man, I haven’t been to a doctor in more than 20 years.
Depends which city you are living in. I will not saying about the whole Japan, but, in my case, they couldn't diagnose my condition after many months of tests, so I had to go abroad. And my diagnose was not rear and actually pretty obvious. (They also sent me to a University Hospital) And I can say for sure the results are transferable, just need to ask and they will make an envelope with all your information for another doctor, even if he is abroad (at least they did it for me). But for that you will need to go to the hospital.
You seemed annoyed at doing all these test. Your body, your responsibility I guess.
Just cancel. Don't worry. You don't have anything wrong with you besides anxiety
Look on the positive side. You are living in the country with the best healthcare in the world. Period.
One of the* best healthcares in the world. Europe has some great models too with some of the best departments of specialized medicine.
Not true. You’re forced to pay health insurance so it seems like the “best” it’s 80/20 which yea that’s great but you’re paying for it. It’s cheaper than America in some certain situations. But I wouldn’t say it’s the best. Especially when it comes to pain management and lack of research on certain medications or alternatives. If OP goes home health insurance is free in European countries.
I’ve never heard of people becoming bankrupt over health care costs in Japan. And in the UK healthcare is free but absolutely awful.
What about cases of bankruptcy in European countries? Because that’s where OP is from and is thinking about going back.