I feel incredibly hopeless.

PS - to be sure: this general experience has nothing to do with Mayo.

I only have good, encouraging, and supportive things to say, and share, about Mayo Clinic Connect. And the doctors I am able to make appointments with so far are not part of the Mayo system. I am not within a reasonable distance of the Mayo system, or I would definitely feel confident in calling upon their expertise.

Wishing everyone well - especially in this season, and these times!

Hi I am Christopher from Lafayette Tennessee. I have my Cancer Dr.s in Nashville Tn at Vanderbilt. I woukd be willing to come get you and bring you to Vanderbilt if you like. I am actually 59 and a single Grandfather. God bless you.

First, I recommend enlisting an ally to help with some of the grunt-work, especially if you lack energy. I am thinking of things like record-keeping, and collecting and organizing medical records.

Next, consider doing a three-generation family history, as mentioned in article below. It is an article about rare diseases.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072891/
If it was a rare genetic disease, then genome sequencing might turn up some information. Nebula Genomics seems to be a reputable company that offers genome sequencing for individuals. The price seems to be between about $100 and $500. Maybe your doctor would do it too.

I have heard that more experienced doctors use a form of pattern matching when they make decisions about what's most likely wrong with the patient. Younger doctors tend to try to reason from first principles. I don't know if I can generalize, but you might try both an old doctor who has seen everything, and a young doctor who is going to think and reason rather than recognize what he has seen before.

I have heard that there is an office within the National Institutes of Health that doctors can consult for rare diseases that have them stumped. Very rarely they even discover new disease.

It seems interesting to me that your symptoms did not exist about four years ago. That suggests that something changed. Can you think of anything that changed about that time? Another illness? Exposure to environmental toxins? Did you change residences, or change your job? Did you travel? Have exposure to an animal? Did you have a new source of exposure to a viral, bacterial, fungal, or parasitical organism?

Maybe you can find a list of uncommon, but still known, conditions that are often overlooked because they are not common. Then you can go down the list of those as possibilities before getting to the true zebras. I'm thinking of things like Lyme disease, long Covid etc.

I heard of a software program called Caduceus years ago that could do medical diagnosis. It was not practical for daily use because of the time it took to put the data in, but it worked. See https://en.wikipedia.org/wiki/CADUCEUS_(expert_system)

Maybe this will give you some leads you can follow up on.

Welcome @taken2011, Christopher. Thank you for being willing to help a fellow member and to share your contact information. It is recommended to share using the secure private message function.

May I ask what type of cancer you are dealing with?

I had stage 4 Esophageal Cancer in 2012

So good to have you here. I think your experiences will be welcome in the Esophageal Cancer Support Group as well. You can follow it here: https://connect.mayoclinic.org/group/esophageal-cancer/

in reply to @brandysparks You could not have said it any better.
Last year I submitted a grievance to Sutter regarding my gastroenterologist who essentially threw me out of his exam room when my questions to him became "too complicated." I was in the middle of a sentence when he stood up, opened the door and said, "go in peace." I said, "What? I am not finished with my final question." "GO IN PEACE."

Now the guy has removed me from his service and I am left trying to find another stomach doctor who will perform the colonoscopy and endoscopy that 4 out of 5 of my doctors keep telling me I need. Guess who does not think I need the test? Go figure. In all honesty, it is not as thought I want the test, who wants these tests?

I may never get either, and that is just fine. Gross negligence is a great term that you have used. I was in the insurance business for many years, handling the worst kinds of claims you could imagine, including medical malpractice claims. Many of them were just "stunningly horrible." While I have given thought to filing my own medical malpractice claim, I will not, because I know once someone does something like that, no doctor will touch them. It's really quite sad. Begging for answers, pleading with nurses who shield their doctors from messages sent by patients like me, saying, "ask your PCP what the test result means." PCP says, "I do not know what they mean, I will have to ask the blood doctor." I say, "I have asked the guy already, and his nurse told me to ask you...."

When any institution or individual for that matter, stops asking if they might be wrong disaster soon follows.

I try to remain open to the possibility that everything I believe today could turn out to be wrong tomorrow. I learned that lesson the hard way.

A little societal humility might just help everyone find peace.

Unfortunately, I have found that humility usual flows from tragedy. How nice would it be if that were not the case.

You have expressed my feelings to a T. I feel just like a number….maybe just one of hapless cows with the unfortunate future of going to slaughter. I I am beginning to realize that none of those esteemed physicians I have had the pleasure(?) of seeing just observe me clinically, give their assessment, and send me on my way. I leave their office, pretty much shell-shocked with the realization that absolutely nothing more can be done to relieve the pain I’ve been experiencing for 17 years.
Sooooo, here I am. Maybe if I was young, I could deal with failure a lot better; however, I’m in my twilight years, dealing with a spouse on his way to Alzheimer’s. To put it bluntly, i am very much overwhelmed at the slings and arrows life has decided to throw at me.
I am a Christian and pray constantly, and I know God has a plan for all of us. I’m just finding it very difficult to realize, THIS just may be His plan! I sure hope not.
At any rate, I am trying to deal with this the best way I can, which, basically, is pretty piss-poor. I don’t sleep much, hardly eat, and plod along. It’s Christmas. Aren’t you supposed to be joyous? Hmmmm….
Bottom line is (I know I’m rambling), I would like to actually FEEL good…..to be happy, and (somewhat) pain-free, but in today’s medical environment, I’m not sure that’s possible when you sometimes feel like an inconvenience with a number stamped on the top of your head.
After this second denial from Mayo, i have come to the conclusion to just TRY to give my worries and fears to God - easier said than done, trust me. Meanwhile, I’m hoping everyone has the merriest Christmas they can. I’ll try to do the same, but at this juncture, not real sure that’s possible.
I am done pontificating about my misery. I could go on, but I’m pretty sure you just might have nodded off by now.
Til we communicate again…..

I've come to the conclusion that doctors are not going to fix as it were any of my relatively new conditions. And they know they're not going to. What is a bit disappointing is that while I had accepted this, I did assume they could manage my problems. Now I understand that that is not going to happen in most of my distinct Medical problems. Guess it's just the process of dying. What I have failed to understand is why we must put up with chronic pain that could be alleviated by habit forming drugs. If you are in your 80s or '90s, what's the problem?
And I would not be upholding my old sod image without closing shots at government for having done all it can to destroy medicine as we oldsters once knew it, nor insurance companies chased by the tens of thousands of unneeded lawyers that law schools pump out every year.

Okay, all better now.