When the doctors don’t know

Posted by stuckonu @stuckonu, Oct 5, 2019

Isn’t there a name for conditions that seem to allude being named or detected? I seem to recall an episode of The Phil Donahue show ( yes Phil had a talk show before Oprah in fact Oprah gives Phil credit for inspiring her original show ) the subject of the show was illnesses that doctors seem to miss resulting in patients going to many doctors hoping that one of them will figure out what’s going on.
I think at the time there was a hospital and team of doctors dedicated to patients who found themself in similar circumstances.
That said, if you think about it, if all you have are symptoms that don’t ring some sort of bell for your average PCP then how does when do research on their own or even begin to explain the symptoms and more if you don’t have the words to explain or describe what is happening?
And when I think about it I also wonder how is it that so many people go undetected until “ it’s too late to do anything”?
If anyone knows of a hospital or doctors who specialize in this x? Situation? Condition? Problem?
Or if you have a name for it please share it with us all. I know that I am not the only one who has experienced the diagnosis: “ it’s all in you head “
Mean while… continued on next page

Losing 4 best friends all within one year of each other.
It’s never easy hearing that someone younger than you has suddenly passed away. 3 of the 4 friends were younger than me. My oldest friend was 14 years older than me and was almost never sick. He did not have a PCP that he saw once a year or from time to time. I informed him that he was automatically qualified for free hearing aids since his hearing impairment was a documented military injury. Once he got his hearing aids plus a monetary disability he occasionally went to the VAMC in San Francisco It seemed horribly ironic that he died there once he was told what he needed to do to survive. He told his children that he had a good life so he was ready to depart. About a week after that he was gone. I never got to say good-bye.
And so it was with the others also. One died from the flu, one died of lung cancer; he was a chiropractor, vegan, never smoked a day in his life. The last friend was my girl friend when were were teenagers. We remained close for over 50 years. She sent me an email informing me that she had been misdiagnosed and one had 3 weeks to live.
At first I thought she was pulling my leg so I didn’t call her immediately. About 3 weeks later I just dropped in to see her and her husband. He was so angry at me that I didn’t get in touch sooner that he didn’t want me to see her at all. But her sister and daughter fought for me to see her but by then she didn’t even know I was there. It’s not easy to talk about any of them without wondering how I didn’t know and waited too long to say goodbye. I also wonder how none of their doctors knew soon enough to give us more time together.
I’m certainly not satisfied with the way my doctors listen to the feedback that I give to them.

REPLY

@stuckonu– Do you mean Idiopathic diseas? Idiopathic is an illness "relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown" (wiki) This si the hospital in New England that might work for your friend.
https://www.brighamhealth.org/
I have no idea if this answers your question.
Doctors are human beings with medical degrees and it's horrible when they misdiagnose, refuse to answer questions or don't confer or research the illnesses that lead to someone dying. It must be painful, to say the least, to lose that many close people. I have read and heard of so many people who have been misdiagnosed. For my second lung cancer the radiologist missed a cancer so it grew into 3 tumors. I was as livid as a dog when his bone is taken away. That led to another lobectomy and chemo for 4 months, 2x week. It almost killed me.
Surgeons miss things too many times. They are human beings, their training has them think inside the box in a scientific method, learning to pick out patterns, taking in our histories and physical exams. We are humans who err also and are not trained to speak to doctors. Often times we do not know how to express ourselves or what know the questions to ask. This can lead to confusion. Just recently I learned that I have 4 lung cancers in my lungs. It was my understanding that each lesion that showed itself to be cancer ( it grew) would be zapped or operated on, leaving me cancer free. My cancer, Multifocal adenocarcinoma of the lungs can be very tricky and very difficult to determine whether a nodule is cancerous or not. I did not know to ask any of my team if I was walking around with lung cancer, although I knew that I had these nodules. They did not think to say anything because the lesions became stable or indolent and were not life threatening. I do take some of the blame for this…we just didn't know… I think that humans are just such an unreliable species, an imperfect species living in a world that is not mechanically precise or geared to plain understanding and communicating.
Does any of this makes sense?

REPLY

@stuckonu I’m sorry that you lost four special friends, that is never easy whether it be one or many. I am now at an age where losing friends, relatives, and acquaintances is too frequent.
As @merpreb commented, doctors are only human, yet sometimes there is no excuse for them not recognizing and diagnosing a medical condition, as in my diagnosis of cirrhosis. I went almost a year and a half with no diagnosis and after being diagnosed (by a neurologist not my PCP) I discovered how many symptoms I had that should have been huge red flags. Had I gone much longer I may not have qualified for a liver transplant and would not be here.
Before I finally was diagnosed I would bemoan that there were no doctors like “House” on TV, whose job was making difficult diagnoses. I wonder, do most large medical centers have diagnosticians as a special unit? There are definitely some doctors who are very good at adding up symptoms and some who are clueless. I know now, that I will never leave it to local doctors if I’m sick, I will head to Boston and get what has arguably the best medical care in the world. Ok, I may be prejudiced, because Mass General is rated #2 in the country to Mayo as being #1 but MGH is rated tops in more specialties than any other hospital in the country. I thank God that it’s just about 55 miles down the highway.
JK

REPLY
@merpreb

@stuckonu– Do you mean Idiopathic diseas? Idiopathic is an illness "relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown" (wiki) This si the hospital in New England that might work for your friend.
https://www.brighamhealth.org/
I have no idea if this answers your question.
Doctors are human beings with medical degrees and it's horrible when they misdiagnose, refuse to answer questions or don't confer or research the illnesses that lead to someone dying. It must be painful, to say the least, to lose that many close people. I have read and heard of so many people who have been misdiagnosed. For my second lung cancer the radiologist missed a cancer so it grew into 3 tumors. I was as livid as a dog when his bone is taken away. That led to another lobectomy and chemo for 4 months, 2x week. It almost killed me.
Surgeons miss things too many times. They are human beings, their training has them think inside the box in a scientific method, learning to pick out patterns, taking in our histories and physical exams. We are humans who err also and are not trained to speak to doctors. Often times we do not know how to express ourselves or what know the questions to ask. This can lead to confusion. Just recently I learned that I have 4 lung cancers in my lungs. It was my understanding that each lesion that showed itself to be cancer ( it grew) would be zapped or operated on, leaving me cancer free. My cancer, Multifocal adenocarcinoma of the lungs can be very tricky and very difficult to determine whether a nodule is cancerous or not. I did not know to ask any of my team if I was walking around with lung cancer, although I knew that I had these nodules. They did not think to say anything because the lesions became stable or indolent and were not life threatening. I do take some of the blame for this…we just didn't know… I think that humans are just such an unreliable species, an imperfect species living in a world that is not mechanically precise or geared to plain understanding and communicating.
Does any of this makes sense?

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GM Merry ( I knew a “ Merry “ once in NJ. I don’t think idiopathic is the term I’m think that I read about those years ago. I know that I read about something or hear on the news about break through procedures and or medicines which may even be in the news for a period of time then for reasons that are unclear that information fades like “ breaking news “ which IMHO is over used and misused ; there is always “ breaking news “ but it becomes hype and the lemmings who watch the news gobble it up as they go over the cliff. Oh no, my “ sin_ick “ is showing. Do you remember Laetrile or vitamin B17? Made from apricot pits and it cured cancer but you had to go to Mexico to get it. It was on the news every night then it was never heard of again and I would bet that wiki has something on it. But that is not the only example. I know that the B17 example is a little different than this type of medicine practice that I heard about. If we could bookmark these stories then we would have to remember an obscure name, place, time. But just like every post here that fades because the general interest is limited, the post fades and the ones that everyone finds interesting stays in the front of the notifications. So thank you for your contribution to my inquiry!
In JKs reply he mentions your comment about “ doctors are human “ it reminded me of the Stars and Strips news paper which often was the one American news we got while stationed overseas. I like that news paper, maybe because it was the only news paper but the stories were mostly of interest to soldiers covering stories of war and battles and we were always interested in what was happening in Nam. But there was one section called “ Graffiti “ and it was often on the back page. I honestly didn’t know the word Graffiti until I read Stars and Strips there was one Graffiti that stuck in my mind forever. I admit that I read it a few times. This is what it said: Doctors are people who Rx medicines that they know little about for illnesses that they know less about for people that they know nothing about. Even though it ended in a preposition , I thought that it was one of the wisest words I ever read about doctors. If I believed my mother and grandmother I would have kissed their ring while genuflecting when they walked in. I thought that most of these “ humans” saw themself as Rock Stars. I hate knowing how many male doctors took advantage of Barbara. It seems to be a cruel joke that she was misdiagnosed.

I wish you all the best in you persist of healing. I’ll pray for you to the best of my ability to pray.
TY again so much for your willingness to reply to my not so interesting post!

REPLY
@contentandwell

@stuckonu I’m sorry that you lost four special friends, that is never easy whether it be one or many. I am now at an age where losing friends, relatives, and acquaintances is too frequent.
As @merpreb commented, doctors are only human, yet sometimes there is no excuse for them not recognizing and diagnosing a medical condition, as in my diagnosis of cirrhosis. I went almost a year and a half with no diagnosis and after being diagnosed (by a neurologist not my PCP) I discovered how many symptoms I had that should have been huge red flags. Had I gone much longer I may not have qualified for a liver transplant and would not be here.
Before I finally was diagnosed I would bemoan that there were no doctors like “House” on TV, whose job was making difficult diagnoses. I wonder, do most large medical centers have diagnosticians as a special unit? There are definitely some doctors who are very good at adding up symptoms and some who are clueless. I know now, that I will never leave it to local doctors if I’m sick, I will head to Boston and get what has arguably the best medical care in the world. Ok, I may be prejudiced, because Mass General is rated #2 in the country to Mayo as being #1 but MGH is rated tops in more specialties than any other hospital in the country. I thank God that it’s just about 55 miles down the highway.
JK

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GM JK thanks for replying. I think you reply to my posts more than anyone. I want you to know that I very much appreciate your attention. I’m waiting to see if you liked my joke from yesterday. It really cracked me up when I first heard it from this young women who was a regular in those long ago “ chat rooms “ I loved her youthful irreverence. I once said to here somewhat seriously about her food choices reminding her: “ you know what they say:’ you are what you eat ‘ and she responded almost immediately ‘ so you are a rump roast ?’ I lagged so hard I was crying. I loved her spunk!
In any event, I didn’t know that Mass General is number two or that Mayo was number one because I honestly have heard quite a few well known hospitals either claiming to be 1 or 2 and maybe it’s more important what YOU THINK I think of it as placebo affect..
I also noticed how you said: “ it’s only 55 miles down the road. We MODERNS think differently than our grandparents who would travel 55 miles unless we were going to a place like no other. Living close to NYC ( 7 miles ) so it wasn’t too difficult to go to the big 🍎 apple to see a specialist. My grandparent were the ones in our family to do the research and decide where we needed to go for the best care especially if the illness stunned the band so to speak. I LOVED going to the city with Gram or Gramps but Grandma knew the city better than anyone I knew even though they both grew up in the city.
See how I digress! Sorry that I go off like that but that’s how my brain works which is great as an artist. If my play ever makes it somewhere you’ll see what I mean.
So you’ve had a liver transplant?
Is it true that transplant recipients must be on anti-rejection drugs your whole life.
Please understand this next question if your answer is yes to the rejection drug medications is it because it’s a precaution or is it necessary?
Thanks again for noticing me and my abstract questions

REPLY
@stuckonu

GM JK thanks for replying. I think you reply to my posts more than anyone. I want you to know that I very much appreciate your attention. I’m waiting to see if you liked my joke from yesterday. It really cracked me up when I first heard it from this young women who was a regular in those long ago “ chat rooms “ I loved her youthful irreverence. I once said to here somewhat seriously about her food choices reminding her: “ you know what they say:’ you are what you eat ‘ and she responded almost immediately ‘ so you are a rump roast ?’ I lagged so hard I was crying. I loved her spunk!
In any event, I didn’t know that Mass General is number two or that Mayo was number one because I honestly have heard quite a few well known hospitals either claiming to be 1 or 2 and maybe it’s more important what YOU THINK I think of it as placebo affect..
I also noticed how you said: “ it’s only 55 miles down the road. We MODERNS think differently than our grandparents who would travel 55 miles unless we were going to a place like no other. Living close to NYC ( 7 miles ) so it wasn’t too difficult to go to the big 🍎 apple to see a specialist. My grandparent were the ones in our family to do the research and decide where we needed to go for the best care especially if the illness stunned the band so to speak. I LOVED going to the city with Gram or Gramps but Grandma knew the city better than anyone I knew even though they both grew up in the city.
See how I digress! Sorry that I go off like that but that’s how my brain works which is great as an artist. If my play ever makes it somewhere you’ll see what I mean.
So you’ve had a liver transplant?
Is it true that transplant recipients must be on anti-rejection drugs your whole life.
Please understand this next question if your answer is yes to the rejection drug medications is it because it’s a precaution or is it necessary?
Thanks again for noticing me and my abstract questions

Jump to this post

@stuckonu The ratings I quote are from US News and World Reports, which I think are generally considered to be the most accurate and reliable. I had my liver transplant at MGH and go there for almost all of my other medical needs and have not been disappointed, which I have been with local medical care. I loved my gastroenterologist there but he is now in NYC at Columbia so I even considered going there since my daughter lives in the middle of Manhattan and I could stay with her. I will travel to get what I consider to be the best medical care possible. Had MGH not come through with a transplant when they did I was ready to head to Mayo since they said they would accept the tests from MGH and they felt they could get me a transplant sooner.

Yes, transplant recipients are supposed to be on immunosuppressants forever. It is a precaution but more often than not a very necessary precaution. Occasionally people stop taking them because they can’t afford them and in some cases have been fine, but that’s a huge gamble, one that I would never take. Our insurance pays for the drugs, thankfully, but if not I think we would sell our home and downsize to have the money to pay for them. Interestingly, I have read that livers are the least apt organ to be rejected. My body and my youthful liver (it’s 37 years old) seem so far to be very happy together. Immunosuppressants are life-savers but can be a real nuisance. There is research being done to take some tissue from a person who will be getting a transplant and use that to somehow create a natural immunity, eliminating the need for immunosuppressants.
JK

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