how to organize information from various tests so a doctor will look at the whole picture?

I avoid doctors in general BUT an ongoing ailment became worse and I began a six month saga caught up in medical craziness.

I had always heard but never experienced the fact that areas of medical expertise are so narrow now that those doctor's refuse to look at anything else in any other area.

This summer I was caught in the web of 'just one more test' or 'here, try this prescription and we can rule out 'this'.

Nothing has hit on the cause so far and I'm resisting any further tests until someone tries to connect the dots.

My GP is a nurse practitioner and trying but I feel like we're floundering.
I think I need a time line, (this goes back years) with all the test results and things that didn't work including all of the things spotted in the tests that were noted, no matter how innocuous?

I have consistently gone the herbal route and after years I'm realizing that without a clear diagnosis I'm not making any headway.


Any thoughts or advice is very welcome 😊

I keep a copy of all blood tests and medial records that show a diagnosis.   An 3 ring folder might be helpful.

This info has been very helpful.

Now days doctors just look at bits and pieces.

I was using a PA, physicians assistant so getting an appointment took some time, like months, years, etc.

I ask the PA for a referral though that never happened.

I hope everything works at for you.

Thank you Anne!
Do you take your records with you to the doctor?

I keep thinking if I can get things organized and into a simplified form it will suddenly become clear what's going on...either to me, ideally, or my GP.

I have a few complex diagnoses, so I have been through something similar.

Creating a history of your symptoms as far back as you can go, along with all your test results and what they were intended to test for, is really helpful.  That's a very important step towards identifying patterns.

Finding communities of expert patients can also be really important.  They will be familiar with many of the challenges you're facing.  

Some questions to consider:

What are the more common conditions with key symptoms that you've been experiencing?

Talking to people who've lived for a number of years with those diagnoses could help you spot the key pattern in your own health.

What tests might have been done that didn't get done appropriately, so might not have given reliable answers?

For example, to get a diagnosis of Irritable Bowel Syndrome (IBS) - which up to 25 % of people get at some point in their lives - requires ruling out certain other less common conditions inckudi g coeliac disease. BUY! Far too many health care services fail to tell you, you have to get coeliac disease tested for **whilst you are eating plenty of gluten & wheat**. The test just isn't valid if you're not eating gluten!

It sounds like you will need to be one an expert patient to get the treatment & support you need, unfortunately.

Start keeping a daily symptom & activity diary too, to keep building up your evident.  Only roughly what you eat but cover broad groups e.g. alliums, legumes, cereals, animal milk products, animal meats, supplemts & fortified foods etc. Make notes about physical exertion, time in front of screens, anything that might be relevant. Note down good days as well as bad days with details of your symptoms.  

You don't need to take all the history, tests & diary to every appointment.  But you'll probably want to jot down a summary of key points.

Very best of luck!  It's 12 months since my IBS symptoms began, ten since my diagnosis, and with Registered Dietitian support, I've made huge strides forward in managing it

thank you so much Ac!
There is no diagnosis as yet, just what seems like trial and error (it's a breathing problem, years old but recently worse)
I've had all the tests and X-rays, cardiac  and pulmonary stuff, ct scans....allergy and asthma meds did nothing...no obvious cause has shown up.

Your thoughts are very helpful and gave me some direction for beginning to sort things out.😊

What tests might have been done that didn't get done appropriately, so might not have given reliable answers?  

this!
and even if done appropriately , interpretations can vary a lot.

Judith Browning wrote:Thank you Anne!
Do you take your records with you to the doctor?

I keep thinking if I can get things organized and into a simplified form it will suddenly become clear what's going on...either to me, ideally, or my GP.

Only for the first visit.  They usually make copies.

Back in 2013 the trend was to ask new patients for medical record before the first visit.  Getting those from previous doctors was like pulling teeth.

Dear hubby just transfer from one Veterans Admin to another VA, and the new facility could not find records .

I said I can give you those and I rattle off all my husband's dates for heart attacks, heart procedures, etc.  and the names of the doctors he saw.

Having those on one sheet of paper would have been more convenient.

Judith Browning wrote:thank you so much Ac!
There is no diagnosis as yet, just what seems like trial and error (it's a breathing problem, years old but recently worse)
I've had all the tests and X-rays, cardiac  and pulmonary stuff, ct scans....allergy and asthma meds did nothing...no obvious cause has shown up.

Have you tried local honey with apple cider vinegar?

I keep it mixed 50/50 and take a tablespoon when ever I feel the need?

Also recommended is a tablespoon of ACV in a glass of water first thing in the morning.

Í love apple cider vinegar but am cutting back on acidic things to see if this is an esophagal related problem.
ACV is apparently not acidic once in our digestive system but can irritate an esophagus because of the acidity on the way down.
This was another thing we are trying to rule out that 'could' affect my breathing...something fairly simple to do.

I love it that you were able to list all of your husbands medical events...maybe no surprise as they all were very serious.

I understand about the ACV being acidic as I am careful not to use ACV then eat.  I can't use turmeric because it upset my stomach even in pill form.

These days it is a lot easier to get scans downloaded onto a disc that you can take home. It used to be nearly impossible but a law got written and now they have to do it. So if you have a series of x-rays or a cat scan you can take it in to a different doctor than the one who ordered it.
Same with labs. They should all be available so you can print them off.

If respiratory issues the order of events is: GP to pulmonologist to cardiologist to GI. If it looks to the pulmonologist that allergies might be a cause, you will get sent there.
And don't forget endocrinology. A poorly functioning thyroid can mess up any random part of your body.
And geneticist. Some people have genes that pre-dispose them to pulmonary fibrosis and other issues, so you might get a genetics consult.

I am an ICU RN. Aboult half of our patient population is in hospital for respiratory issues, so I have often seen this process go down.

This is one area where I think AI can be very useful, even though I generally wish AI didn't exist. Since it does exist, I use it, for now, for the sake of myself and my loved ones.

I like to put together a lot of documentation -- what the symptoms are and everything relevant, including the timeline of when symptoms began and when they changed or worsened, etc -- and then use AI to give me possibilities of what might be going on.  I'm aware AI often will make egregious mistakes, so I don't make decisions solely on what it says.  But what it can do is give me a bunch of possibilities that I can then rule out or investigate on my own.

Just be aware anything you tell it could get stored forever on a server and used to serve you ads, or get hacked and become public one day.  The same is true of everything you ever search for on the internet.

The medical network I use has a system called something like "collaborative care team" that gets formed for pesky-to-diagnose situations or conditions that span specialties. I'm not sure what has to happen to form such a team, but if you go to a big organization rather than a bunch of private doctors, ask if they have something like that.

thanks all!

Thom, DVD's are a great idea.
At the moment I have only the tech's interpretation of each test and then my gp's agreement or disagreement with same,.

The test line up has been just as you say, starting with pulmonary and heart stuff....we are up to neck and throat.   lungs, heart and thyroid all good.

Phillip, do you just give all that info to a search bar or is there an actual AI medical
site?

Christopher, that:s good to know ...will ask my GP if it's available.

I generally have more success by writing down a "story" about what is happening.

Bullet points with headers. These are the symptoms, these are some potentially unrelated symptoms I'm including in case it's relevant, here are my prior diagnoses, this is a list of things i have tried without success, this is a thing that maybe helped a bit,  these are the tests i have already had...

I often recall details while writing that my doctors miss asking me about/i forget when answering their very specific questions. My docs seem to like it because it saves them time on note taking,  and they get info from me faster than by asking me questions! They often want to keep my notes.

After a quick scan of my 1 page notes, they ask more useful questions and i find i get better help.

Thom Bri wrote:These days it is a lot easier to get scans downloaded onto a disc that you can take home. It used to be nearly impossible but a law got written and now they have to do it. So if you have a series of x-rays or a cat scan you can take it in to a different doctor than the one who ordered it.

This is a great idea though we have never found a doctor who would accept looking at them for fear of getting a virus infecting their computer.

I can really relate to this! Navigating the medical bureaucracy feels impossible. I’ve resorted to using AI to help put symptoms together so that I know what to ask the doctors to test.

Hello,
As other already said, I would scrape every result and every consultation report you could find.
There is no real organization needed. Plain chronological order is better to spot a pattern.
Then the hardest part is to find a physician who will dedicate at least one week to digest a complex file before the proper consultation ... That work is only seldom done and never a main activity where I live, as it is mostly 'pro bono' if you want to help people.
For that is is better to ask your family physician for a referral, since those kinds of consultations are usually closed to the public and nested within mutualized networks.
AI can compile - with some 'interesting' errors you will have a hard time to find - but it cannot interpret data to create new hypotheses. In my opinion the summary has to be rebuilt from scratch.
Good luck,
Oliver

proven fact. got right to the point with your doctor in the first 30 seconds of speaking with them

you are much better off just finding an experienced acupuncturist.  Acupuncture truly gets at the root.  An allopathic "diagnosis" is a label that is very structurally prone to lead to mercantile profit.  Profit is good!  The issue is that you are exclusively the medium by which profit is reached within the bureaucracy.  Thus you are not even the customer, so no one is actually there to serve you and is in fact punished (through time-costs/burn out) if they do so.
You also mentioned herbal application.  Remember there are literally dozens and probably 1000s of combinations that can be effect.  Like drugs, they can also be used as suppression that eventually fails. Or, used to go after the underlying pattern that leads to the dysfunction that leads to the symptom.  So another herbalist could possibly be of service as well as Traditional Chinese Medicine herbal formulas.
Lastly but far from least, what about psycho-spiritual-genesis?  When this is brought up, many people assume it means someone is telling them "it's all in your head" which is preposterous when you experience regular/periodic debilitation you cannot control, right?  Or if you see abnormalities on Xray, or blood work etc etc etc.  That comes down to one's understanding of the fundamental nature of reality...like as in the relationship of what's 'in our heads' and the patterns of the organization of matter that make up a totality of our experience of being embodied.
Which is all just a very long way  of saying it can be extremely valuable to work at this level - the level of thoughts, e-motions, and elemental patterns (ion flow) within cells that make up our bodies.  Not  because the root of the disease is somehow mental but because the root of reality is known to be formative in this way - such that even if you had a rock solid doctor level chemically confirmed label (diagnosis) that came with a rock solid insurance-paid actually better-than-no-intervention treatment long term, it is still to your advantage to alter the psycho-emotional-spiritual (non-matter) patterns as well.
So, how do you do that??  Dozens of ways, again.  E.F.T / Emotional Freedom Technique aka Meridian Tapping, T.A.T. / Tapas Acupressure Technique, C.K. / Compassion Key, N.P.A. / Non-Personal Awareness 7 statements, meditations....any "release" approach that allows you to change up the vibrations of what you notice taking place.  You can DIY YouTube it or find someone to guide you expertly.  Vibrational "thresholds" is what emotions are in the fundamental nature of being embodied, besides chemical communications between cells in your body.  Emotions are energy in motion that constitute vibratory thresholds for matter to organize around.  Which is another very long pretty fancy way of saying that that your mostly-subconscious state, often running in the background while you go through your day/life, deeply affects your body.
So check-in with yourself.  What do you notice when symptoms come on (internally)?  What is the feeling state (not the intellectual assessment of the state)?  What's the feeling state when you think about your condition and the lack of clarity/support in facing it?  You can also use meditation time to tune in to what is going on...Is it related to inspiration?  old sadness?  stress/worry/fear?  feeling smothered?  a loss you feel you are surely past by now?  Sometimes its just common sense like, such as why don't you have enough breathing room?  What niggly fears could get you holding your breath?...and release release release.  Without release/moving the emotions, which are often layered, it's just an intellectual booby-prize to sense what the issue pertains to.  When the vibratory threshold is shifted (the emotions have moved) different thoughts and ways of view experience naturally arise.
This can save you a lot of money, a lot of suffering, and spare your liver and kidneys the detoxing tasks pharma demands.  It's a great life tool.

I'm sort of with Catie George, Make an outline.
Headers being primary symptoms by approximate date, bullet points of tests, one sentence of result of test, note as to whether you have the actual data for it.

I'm also sort of with Bruce Fine, They won't look at anything complex, they want something they understand in less than a minute or so of reading.

The part that I find hard with my health is the medical schools do not train to look at things holistically, they train to break it into bits and look at only one or two bits.
I do best with Naturopaths, they are more trained to look holistically. Some are much better than others. Functional Medicine is also more holistic, and again, some are much better than others.