How can this be

Don’t just automatically trust a diagnosis from ChatGPT please. Consider it as something that will cast a wide net covering every possible thing you ‘could have’ at a high level. You will need to provide it a LOT more info and keep refining your prompts to reduce that net.
I tried ChatGPT for very odd symptoms I have and it was way off from the actual diagnosis and I’ll explain a little my experience.
I’m a data person so I created a ChatGPT project and loaded the following:
1) Individual MRI’s, CTs, X-rays for past 3 years
2) All clinical doctor notes as individual files from past 3 years
3) A download of all bloodwork from past 2 year formatted as a consolidated table (had chatGPT do that for me)
4) A table of all active medications
5) A download of all medications filled over past 2 years from my pharmacy website
6) A detailed list of all my current supplements including brand name, dosages, and an Amazon link to the exact product
7) A detailed list with description of all my symptoms including: frequency of them, start of the symptom severity level (severe, very high, high, moderate, mild), presentation (constant, cyclical meaning if only when x occurs or only in mornings, sporadical) description of the presentation (e.g. pain in lower back is located on the right side and is ‘severe’ in the morning waking me up), what makes my symptom worse, what makes my symptom better (e.g. Pain reduces down to ‘moderate’ or ‘mild’ after my morning walk), symptom sensations (e.g. pain is deep and burning or pain is sharp and sudden), other symptoms that may also occur when this symptom is worse
8) List of all therapies I have tried, dates, frequency and duration (e,g. 30 min, 3x week), was the therapy effective, if therapy is not active reason for stopping
9) list of specialists I have seen, dates, if they are actively treating me, if I am not seeing them why, summary of what diagnosis or suspicion of diagnosis I seeing them for
10) list of past surgeries ever in my life
11) list of serious injuries or accidents ever in my life
12) family history

I then start ofd with a simple first prompt and say “if you were an internal medicine doctor, what questions would you want to ask this patient”. Then answer all those questions and ask ChatGPT to commit these answers to memory as an artifact for your Project (not just your chat)

Next prompt “as an internal medicine doctor, what specialist referrals would you recommend for this patient and why. What order should they see which specialists”

Next prompt “if you are the first recommended specialist, what questions would you have for this patient”. Answer and ask it to commit your answers to memory as in the above prompt. Keep asking this prompt until you have gone through all recommended specialists.

Next prompt “update my symptom list based on my answers provided so far and generate in a printable table view while committing this as an artifact to my Project (not just the chat)

Next prompt “analyze my uploaded bloodwork, list of medications and supplements and updated list of symptoms. Provide any insights into any medications or symptoms that could be contributing to my symptoms or bloodwork levels. Explain as if you’re talking to a general patient and use easy to understand terms including what the impact could be, why does it cause an impact, and are there any alternatives I should discuss with my doctors.”

Next prompt “do you see anything in my list of past injuries and accidents or surgeries that could be impacting the symptoms I have today”. Continue a q&a with it till you understand as scar tissue (say from a hysterectomy can cause some back, nerve or muscle issues as in my case). Important- ask it commit a summary of the impacts to it’s memory and as an artifact for your project.

Note I NOT asking for it to diagnose. Next prompt “I am the patient, put an easy to understand list of things I can start doing at home to ease my symptoms while I wait to see the doctors. This list should be generated using an internal medicine practitioner view and so not included anything they would not typically suggest”

Next prompt “using everything you know so far what other questions do you think an internal medicine doctor or specialist would have for me that have not already been answered”. Answer them and ask it commit to its memory and as an artifact in your project

Next prompt “prepare a printable packet for each doctor I can take with me to my appointment and include: a page of numbered questions I should ask, a reference sheet for me of reasons for asking the questions that are number to match the questions, exhibit pages for the doctors using sections from my artifacts that the doctor would be interested in knowing about - make the exhibit part of the packet numbered and pull that number onto my reference sheet so I can also understand how they may relate to my questions”

It is also a good idea to always ask ChatGPT to re-review everything in the packet again against all artifact in the project and ask it what else it should include that it may not have, or ask it to think again and again if there are any other questions it feels should be answers by you to ensure you have the most productive discussion with your doctors.

Please don’t gaslight yourself by asking it what it thinks is wrong or what the diagnosis is. If it tries to give you that information steer it back to information for the doctor.

The sequencing of the prompts is key so it ends up having all the information it needs to ensure you have enough information for your doctors as they are the only ones who can diagnose. Doctors can’t spend hours with you so the more information you have the better as it will help you get to a diagnosis quicker and reduce your chances of a misdiagnosis. Remember to be a partner and collaborator with your doctor as we are all complex beings and symptoms could occur with 100’s of different things. Also, just because you have spinal degradation doesn’t mean something is ‘wrong’ it could be part of aging.

The thing is ive spoken to drs and pharmacist because my symptoms and test results xrays mri all match chat gpt even fluctuating crp level and fibromyalgia does not cause that just dont understand how u can test Positive for certain conditions and have practically all the symptoms and be told I think its fibromyalgia just like im HLA-B27 positive and suffer with lower back pain and some days unable to walk the fact that I swell up when im in a flare up and and im being told I think fibromyalgia well ive asked for a 2nd opinion as ive had this problem for 4 years and its so much worse now x

Chat gpt is wrong quite often. I use it for work and gardening, and tried to use it for figuring out whats going on when the Doctors haven't figured out much. It says go to emergency room yada yada. It isn't capable of diagnosing because it can't physically see you. How you describe things to chat gpt drastically changes the answer. Not saying nothing is wrong or dismissing your symptoms. I just found out my fusion in neck failed and when I put the report in chat gpt it told me I shouldn't drive, work, or turn suddenly. This issue has been going on for 4 plus years and it is not an emergency as chat gpt states. I am super frustrated that my issues aren't resolved so I feel for you.

@chell926 Great description of how one might use AI as a tool! Thank you for being so thorough.
My retired PCP would love it, she always told me that based on my medical charts an unfamiliar provider would expect someone who can barely get around...and there I was plugging along. I would be afraid to ask ChatGPT!

Hello @lisamarie27,

AI tools can be helpful in deciphering information or other low-level tasks. However, they should never replace a medical professional's opinion and diagnosis or be used to create, alter or influence treatment plans or seeking medical help. They can, however, help generate questions to ask your provider or offer insights that may lead to better discussions with a medical professional. Here is what our Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) offer about the use of AI:

AI (artificial intelligence) tools can help answer questions. These systems collect data and use it to provide simple answers. But the information AI tools provide is not always accurate.

Be human and don't post AI answers. Follow these guidelines:

Share your real-life, first-hand experiences.
- If you use AI, use only short, specific quotes from AI along with your personal experience.
- AI-only posts will be removed.
- Always fact-check AI content. You are responsible for the accuracy and relevancy of your posts.
- Include the question (prompt) you asked the AI tool.
- Ask your AI tool to provide sources and citations.
- Be transparent if you use AI text to create your post.

@lisamarie27
I understand your position as I am in a very similar situation however my ANA is positive with a very high titer but all tests to identify it are negative. My point about having ChatGPT assist with consolidation of your info is so relevant facts are presented to your specific physician. Often we tell doctors too much information or highlight the loudest thing bothering us. I have learned that each specialty focus on a fraction of what you say as the rest is not relevant. Chat Gpt or my new favorite Microsoft Copilot can generate trend lines and charts and overlay say you nutrient level blood tests like Calcium, Ferritin, Protein etc and their trend lines over a trend of medication dose increases, or changes in supplements. The more you can assist in presenting the information relevant for that specialist to them the easier it is for them to do the thinking and analysis. You can shave of valuable appointment time by going in with answers to what they will likely ask you up front.
I will tell you that it is work to load all the documents I am suggesting but as your medical journey continues you just load more and have ChatGpt consolidate. Time now will 100% pay off. Dr’s won’t have time to do this for you yet the information is valuable to them. If you go to appointments with everything and too much information, not enough information, or info not needed for that specialty you run the risk of them not being able to focus on the most valuable facts that can help you and you wasted that appointment and the referral. In a nutshell we should put in the time and effort around the medical data so they look and assess. Every time they have to request records, search for tests, flip through 20 blood tests to compare trend lines, ask you details about your symptoms where you may forget some on the spot is only hurting your time with the doctor. I put packets together and have received nothing but gratitude from the doctors as now we can focus on the discussions that really matter. If you are convinced ChatGPT gave you the right diagnosis but doctors disagree then to me it means you have not shared enough or the right level of information. All I am saying is there is NO downside in leveraging ChatGpt to help you with the consolidation of data to support your visits. You just have to invest time

@chell926 My God…. What a horrendous amount of time it would take me to do what you have done in putting together your medical history.

I too use Chat GPT but be cautious about putting anything too personal or identifiable in. Everything you enter into Chat GPT or other like programs are available on the World Wide Web. If you would accidentally put your name in, someone else might see your information along with your name.

@babe2004 I copy and paste so can take out my name and drs i just do the medical stuff I keep all personal information out of it xx

@chell926 u are right chat gpt has told me thing to say questions to ask and ive started that it also told me none is putting the pieces together as i also have ibs,hypertension, ventricular ectopics and osteoarthritis in my hands wrists ankles feet and bursitis in my hip all this started over 4 yrs ago and its been one after another and its being treated separately so I get my second opinion from my new rheumatologist in November so hopefully he will look at it altogether xx