Last weekend, due to fast spreading of weird skin rash and unusual foot joint pain which made me losing \~90% of walking ability (I can only barely standing by holding something), I was unable to go for medication without calling 119 (I am on 2/F of a detached house I don’t think there can be any other option for me).
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Called 119 first time, didn’t expect that they don’t have anyone can speak English??!! But anyway ambulance men came and grabbed me. I heard from them that most likely they will just treat my pain to allow me to walk then will be discharged, this was expected and I am looking for clinic to visit in coming few days.
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In hospital I showed them that I had actually visited another doctor a day ago about my skin rash so just need to focus on how to make my feet to stop feeling painful then I can go. Soon I was told the joints are good and they did not find a way to make the pain stop, during inspection they found that I was having fever as well. The medical intern seemed to be lost and went to get a senior. The senior came and checked, also have no idea about my situation, and at that time my fever wasn’t stopped even with acetaminophen injection. Since it’s already night time and my fever was non-stop, I was asked to stay in hosipital for a night and wait for blood test result to see what happened. And of course I am fine with that (I was worrying how to go back home if I got kicked out from hosipital under that condition).
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Following day I saw a group of doctors came in to my room, also with quite a lot of medical interns, I hope they can tell me something from blood test but result was negative, no finding, no conclusion. And without painkiller my fever just won’t stop, even I was given antibiotics. More doctors bringing their fellow practicing one to check my case. I was wondering if my case can be that interesting to them?
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Later they told me that they suspected me getting rare diseases that they’ve never seen (OMG, this usually won’t be good), and arranged more blood test for bacteria culture, body CT scans to look for tumour, skin biopsy, X-ray, HIV/TB test, etc….and during those days they still didn’t find a good way that can stop me from getting high fever. I still remember there was a few nights that I slept with a few pillow sized cooling pad because the daily limit of acetaminophen was hit already and they cannot give me NASID continously.
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On the 4th day finally pathologist should have found some evidence from my skin biopsy but they need to make sure I have no self immue disease so I had to wait for another doctor to confirm from an university. The verdict was presented to me on 5th day, it’s also a group of doctors and try to explain me that my case matches SWEET Syndrome which is a rare syndrome in dermatology (was told by someone that’s 1.7 cases out of 1M population???) since I have no any blood related disease nor tumor and no cause can be found.
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During all those days, every day there must be senior doctors bringing their interns (and they take notes!), I still remember the small surgery of skin biopsy there were 10 people in the operation room! Oh well but at least they got the conclustion eventually and now their head of dematology becomes my main doctor and continue the treatment with their team.
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Now it’s my time to study how to pay the hospital charge with insurance, it looks complicated.
23 comments
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And?… Some hospitals are teaching hospitals. How do you expect people to learn? When I was in hospital with asthma (over 10 times, many different hospitals) it was a regular thing to have groups of students come and study me and my files.
I had the same thing happen to me, but with appendicitis. Not nearly as an interesting case as yours, but there were visits from interns all day long.
Hope you recover soon!
How much do you have to pay?
And how much specifically for the ambulance trip?
It’s rather reassuring that they managed to figure it out. Doctors are amazing! Thanks for sharing and all the best in your recovery.
Oof that’s one I’ve also only seen in text books. Usually people that have it do have some kind of autoimmune disease or cancer, so I’m glad they checked you thoroughly!
If you need help with how to pay the hospital bill, the first step is to go to the kuyakusho or shiyakusho and file for the monthly out of pocket limit. Unfortunately you’re doing this retroactively, so they will refund you the money you paid already. You should be refunded all except 50,000-85,000 depending on your income. If no income it’s less than this. If your salary is more than average it could be more. It takes about 2 months to get the money back.
Edit I realized the Japanese may be helpful here:
医療限度額認定証 (いりょうげんどがくにんていしょう)
医療費返金申請 (いりょうひへんきんしんせい)
[Here](https://www.mhlw.go.jp/content/000333279.pdf) is the explanation of the system
‘the good news is you’re going to get an illness named after you’ !
For payment you will get reimbursed of almost all, no worries, see the other comments
ngl most interesting thing ive read in this sub all year
That must have been quite an experience. It’s great to see doctors taking it so seriously. I wonder if you can get reduced bills if you are taking part in (the subject of) their research.
Was it a university hospital?
Because it’s a rare case the doctors probably thought it was a rare learning opportunity for students/interns. On one hand I think the doctors must be good mentors. But on the other I’m glad you didn’t have a disease where you get to name it.
All the best in your recovery.
Something similar happened to me when I was a child. I had a rare disease called mastocytosis that caused me to go into anaphylaxis and have all sorts of weird hives and rashes come up on my skin at random times. But all the weird skin stuff mostly appeared on my butt.
I was 5 or 6 and I was being seen at a university hospital and they had me come in and take my pants off and lay down on a bed in a big room under a bright light. There must have been 20 or 30 people who came in to look at my ass and take pictures while some guy stood there and gave a lecture. It was a really weird experience!
I bet you’re at least a little bit sad you didn’t get a disease named after you.
Glad they found what you have !
I also had a very rare disease when I was 15 in my home country, and doctors were coming from faraway to see this, and they even took me in a different big room where they were kind of looking and discussing this with a glass of something…!
Noche celebrity status among the medical community, dam
So. What kind of meds are you getting? Anti inflammatory? Intravenous? Or… whatever else exists. Not really familiar with medical lingo
Just a heads up, English speaking foreigners are such a small number of foreign residents. Most foreigners are from other parts of Asia.
I’m just happy they figured it out maaan, hope you’re recovering well!
This is like the real life meme of “My sickness is so rare they ask me to name it”
A similar thing happened to me when I went to 東大病院. Mine was a pretty mild case but they (1) brought out several groups of student doctors to practice on me and (2) seemed to be keen on convincing themselves that I had something super rare and tropical (I didn’t).
I suggest to contact one of those TV shows about rare medical problems and how hard working Japanese Doctors solve the case. I forgot the shows name, but it’s on from time to time and it’s interesting too. Sounds right up their alley. Glad your doing better.
I think you shouldn’t worry much about the bills. Some years ago , this is 2015, my neighborhood gastroenterologist diagnosed me with appendicitis, I was barely able to walk because of the pain. They referred me to and hospital close to my gastroenterologist clinic, and they sent me quickly on ambulance to the university hospital. In thirty minutes I was on surgery. Beautiful job , my scares are almost unnoticeable:)
I was on low income those days so one relative of mine talked to the shiyakusho and I only had to pay ¥80,000…this is surgery plus five days of recovery at the hospital.
Sweet’s is rare… been in medicine 28 years and have never seen one (other than discussed a case in am report)… did see a case (actually dx it) of kikuchi fujimoto disease.. speaking of rare diseases heh.. Hope you feel better OP… make sure you get fully worked up when you get home.. roids will make you feel better but occasionally sweets has other associations that need to be worked up
This just looked like a typical Japanese medical drama set in a university hospital when they make their rounds shdsjshsjsh