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Would you want to know?
A friend of mine just told me that after taking a treatment for weak arms/muscles for 3 months, his doctor, after telling him that the treatments seem to be working, told him that he had feared that he had Lou Gehrig's Disease (ALS). I was shocked that his doctor didn't tell him it was a possibility during the original examination, and the doctor told him that he didn't want to alarm him until he was sure. My friend said he was glad the doctor didn't tell him three months earlier. My initial thought was if I was possibly going to die I would want to know so that maybe in those 3 months I could have done things I'd never done before on the chance that my life might end sooner than I planned. How do you all feel? Should the doctor tell you all the possibilities regarding your health? Would you want to know as soon as it comes up that you possibly (not a diagnosis) have a life threatening disease?

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lerlo 8 Sep 24

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24 comments

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6

Don't tell me anything until it's a fact. I lose enough sleep over "real" things already. I don't need to lose sleep over "possibilities" too.

5

I would want to be fully informed of any health issue. It's about me and I need to know, period.

But, if it's not a known fact, why raise any alarm?

@SkotlandSkye I could accept the information in the context of "we suspect it could be this and will confirm." Or even including it as one of several possibilities. I get that some people would take even a suspicion as a death sentence, but I'm a firm believer in the "ya don't know til ya know" philosophy. =]

5

The day i was diagnosed with AML-acute myloid leukemia 6 years ago I was told if i didn't start chemo immediately I would be dead in 3 weeks. After my sister-in-law died going through chemo I said i would never seek it as treatment. But when my life was leaving me it saved me as did a bone marrow transplant. cancer free for 5 years-I would want to know should it recur.

4

Scaring patients on unlikely maybes seems like bad medicine to me.

4

You possibly have a lot of different things right now. What percentage chance is appropriate for a physician to raise an alarm? There's a 2% chance you have cancer right now, do you want to know? How about a 90% chance, do you want to know now? Where is the line?

On top of that you're not the one who has to make the decision. I believe there have been medical malpractice lawsuits based on improper life-threatening diagnoses, when people sold their homes and quit their jobs only to find out they were going to live another 30 years. I think he made the right call, I wish that if he thought ALS was a serious possible concern that he rushed the tests along a little faster but still the right call.

Well actually I'm about to ask a doctor friend of mine about any ethics involved, but personally yes, I want to know everything because it's my body and my life and I get to make the decisions based on that. As for improper diagnoses that's wayy different than telling a patient, "based on what I see here are the possibilities." No lawsuit there.

@lerlo You can be sued for anything. However the other factor that I didn't really get into is that the "percentage chance" I mentioned is an arbitrary value the physician comes up with in his head. Yes it can be called a "guesstimate" based upon past experience or statistical evidence, but how this one patient fits in with all of that still creates a significant margin of error.

Personally I say live like you're going to die tomorrow already, then you don't need to worry about when.

@mattersauce Yes and you can pay costs and lose a license for filing a frivolous lawsuit. It sounds nice for people to say they live like they are dying and maybe a small fraction do (as long as we're talking percentages) but until you really are at that point I'm sure people would come up with things they needed to do that they haven't done.

4

Well . First of all , patients come to ED or to doc office on these days after they have already diagnosed selves on google . And they are half convinced that horrible and life threatening diseases are hovering above their soon to be dead bodies . Not understanding what they are reading or the application of such readings is causing anxiety and panic and waste of money . And wrinkles and grey hair for anyone involved .
Second , in order to rule out any suspicions of life threatening diseases or conditions that will definitely change your life will need to run diagnostics , more than just lab / blood work . I can't imagine how the patient won't be informed and sign consent for such procedures . MRI , lumbar punctures , nerve conducting tests , etc , all require a potential diagnosis code for insurance and for patient to sign for .
That to be said , if u come to ED bcz dizzy / vision changes and mascular coordination changes , and if your age and such matching a suspicion for MS let's say , is not the first thing that needs to be blab out of a physicians or nurse mouth . No point to stress u out until we rule out (3-5 days ) a stroke , an infection and much more that no time to address here . Yes . There will be a few day delay b4 we have results and start thinking / telling u about such a diagnosis .
And I am ok w that .

4

No, why should the doctor mention the remote possibility of a very rare almost certainly fatal disease any time a patient's diagnosis isn't certain? Frankly the doctor shouldn't have mentioned ALS at all.

3

I'm finding it is not yes or no for me. I'm having a brain mri to see if I have brain cancer this Saturday. Next Tuesday I'm going to Maine on a bucket list vacation. I don't think my doctor will say I have X amount of time. But I'm not going to stop working on the list.

Good luck

@lerlo I'm going on a windjammer cruise. Last of the season. Nothing will stop me. Even if its bad news. I'm working on a plan.

@confidentrealm Suzanne, I've always wanted to do the Windjammer! I hope you enjoy it the most. Would love to hear what jobs you did on the cruise. From sweetcharlotte in NC.

@sweetcharlotte I'm excited but I don't know how strong I will be to work. Maybe pull a rope or something. I'll post pictures when I get home. I'm planning to go to Acadia for awhile too.

@confidentrealm Been there, it's beautiful. Know a mounted ranger who works there name Bill, about 65 years old. Rent a horse and ride with him.

@sweetcharlotte It is on my list. Thanks.

3

I could die tomorrow from a car accident or lightning strike or heart attack or 8000 other reasons. I'd rather only know if certain. I'd spend more time worrying than living, and I would rather live life to the fullest, no matter what.

Ozman Level 7 Sep 24, 2018
3

I have Polycystic Kidney Disease. One of the side effects of this disease is the possibility of a brain aneurysm. At my nephrologists suggestion I had a MRI. Good news, I don't have an aneurysm. Bad news, I have moderate White Matter Disease and was referred to a neurologist.

The neurologist looked at my MRI and took my health history. She saw evidence of a silent stroke and the possibility that I have MS. I had two choices; have a spinal tap or have follow-up MRI's for the next year. I opted for the follow-up MRI's.

After all the follow-ups it was determined that I do not have MS which I am very glad. For me, I would want to know if I have some type of terminal disease (which I do with Polycystic Kidney Disease. Eventually I would have to choose dialysis, transplant or death as there is no cure at this time).

For me, the unknown is more terrifying than knowing. At least knowing you can prepare yourself and your family.

Sorry for what you've gone through, hang in there!

@lerlo Thank you.

3

I try to face life head-on. I would want to know everything, including the
possibilities, and my options.
I don't think not knowing until it was certain would make any difference.
Then, if I found out the tests were negative, I could celebrate my relief.
Always tell me the truth, don't keep anything from me, if it's about me.

3

I wouldn’t want to know until it was certain. I can’t see how it would be better to have my family worried unnecessarily if it was not a certain diagnosis. Maybe because I am quite old now at 73, I wouldn’t want to have a death sentence hanging over me when it was only a possibility not a certainty. I can’t actually see any advantage in knowing earlier even if it did prove to be a positive diagnosis.

2

I would rather know so that I can make decisions about closing out life, if it came to that, rather than feeling surprised and then regretting the things I did not get to do because I did not know.

2

My doctor suspected I could have MS when I started losing my sense of smell. I'm glad she didn't tell me because it was weeks till they could do the brain scan & another week for the results.

Another time she thought she found a lump & sent me for a mammogram. I had to wait a month for it! Very stressful--wondering whether to buy life insurance or something, trying to keep my mind off of it. I was happy to learn I was OK.

Carin Level 8 Sep 24, 2018
2

I have been out of cancer treatment for 11 months and just found out that my saliva glands may never completely return to normal. I'm upset that I was mot told all the bad things that mihht happen from radiation and chemo. It would not have changed my consent for treatment, but what recovery I've had would have been a happy thing instead of disapointment.

glad you made it through

2

to many people in your country have sued on the basis of a maybe diagnosis for drs to be anything but certain

perhaps you're confusing a diagnosis with explaining the possibilities...the question refers to wanting to know the possibilities

2

I would like to at least know the physician felt an urgency to rule out certain things, because I've a history of being super terrible about getting a slip to have something done, then get distracted & forget about it, which in my case could be deadly. So for me, at minimum need a dr to convey their grave concern VERY CLEARLY.
Good thing your friend followed through immediately and didn't space like I might have. SCARY!

Do they not cover these bedside manner issues in medical school? Seriously F'd up.
People do dumb, mindless things all the time, yes I'm guilty and been on the receiving end of that as well. There are affairs to attend to; life insurance policies, beneficiaries etc

A friend of a friend of mine recently died in a motorcycle accident. The guy never got around to changing his beneficiary on his life insurance policy. Apparently it remained in his ex wife's daughter's name(his step daughter). Now the memorial is in the step daughter's hands due to his family not having the means to give him a service in good time. They're going to have to wait until they can gather up the funds! smh

Set me out on Wednesday night with the rest of the trash and have me hauled off on Thursday morning.

1

For me, it would depend on how sure the doctor was. Was there evidence and was he doing tests to confirm or rule out It's terribly paternal for a doctor to keep things from a patient. It's our life. How could they know what is best for us. It should be our decision. It's something that they could ask the patient. I wouldn't want to know about idle speculation, but I would want to know if there was some evidence and degree of certainty. I would want to know what symptoms point in that direction and then I could pay attention to them.

1

I just ran across this article about predicting death. While it does not address the question put forth by the poster, I think those following the post and/or interested in the question might find interesting.

The Cat Who Could Predict Death (It goes beyond the cat, I promise.) [tonic.vice.com]

1

I voted Yes, because I would want to plan. I don't want to leave a big job for my children to deal with. I like to be prepared. If I know when I'm going to die, it will motivate me to be ready. My adult children will have to do very little and can go on with their lives. I call that being considerate of others, which is more important to me than the alternative.

1

I remember when i ws diagnosed with Leukemia. Originally it was an ophthalmologist who ordered the blood work for the original diagnosis, but i want' told wha tit was. I was just told I needed to go to the emergency room ASAP. Then, in the emergency room they wanted to confirm the original blood counts in the emergency room. They kept coming in to take more and more blood without telling me what was going on. Then someone comes in to inventory my possessions, and ws surprised nobody told me they were admitting me to the hospital. The doctors came in half an hour later and told me that I had leukemia, but they were waitign for genetic tests to coem in to determine the exact type. I was also told my white blood cell count was above 180,000, and because that was so high they could not really get a count of the other blood cells. Once of the doctors said it was the highest white count she had ever seen (I assume she was an intern). A day later they had a partial diagnosis. There was an arguement as to whether my condition was chronic or acute. They decided on Chronic, I think in part because there was a drug study beign done at the facility for those who were "chronic" for a drug that was already approved, but they were just gatherign more data on the drug. So, they enrolled me intothe study and the drug, which costs more than $8000 a month was provided for twoyers fro free.

The grug ws design to keep the disease in check, but not to cure it. However in my case, it worked too well, and I got cured, which is not a common outcome. Anyway, despite no sign of the disease for about three years, i continued ont eh drug as long as i could stand to tolerate the cumulative side effects, and when i coudl not stand it any more I stopped taking it. That ws mor ethan thre years ago and I am still fine.

Anyway, It would be nice to have known wht the doctors were thinking rather than having to wait for several hours, but in the ned they took the tiem to get the diagnosis right before telling me. For most people telling them what is going on too soon would probably cause needless stress. Also if an early diagnosis is wrong, then the patient is worried about contradictions.

1

The only reason I opted yes is that I have cubs to think about.

1

I always want to know the entire range of possibilities and, in particular, what the tests are looking for. I went into the walk-in clinic several years ago with what I thought was extreme digestive upset. They drew blood, which is what I expected. I could tell that something was really wrong when the results came back and the entire atmosphere changed. However, it was my physician/daughter who told me I had pancreatitis when they called her to convince me to allow myself to be admitted to the hospital. (I wanted to go home to make arrangements for my dog who was alone.) I might have been more cooperative if they had told me I had a potentially fatal problem from the beginning. As I age I'm choosing to refuse to have some tests done if they don't affect treatment. Why pay for an xray to determine whether the arm is broken when they plan to cast it anyway? But I can't make that decision without all the information. (As to the dog, my daughter handled it long-distance with some of my friends and the dog's vet.)

1

I was told I had MS (I know way different but&hellip😉 before MRI (gold standard in diagnosis). My neurologist held my hand and told me everything would be ok. MRI came back normal a month later. Fear and stress engulfed my life during that time.

Idk why the weird smile showed up.

@BeccaVa You making a pass at me?

@maturin1919 lol

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