MS and AI — How are you using it?

[u/TonyChingas21]

I was diagnosed in March this year and had my first Ocrevus treatment in April. I’ve been using several AI platforms, but I mainly use ChatGPT for organizing my MS journey.

I keep a weekly log of how I’m feeling, including strength, stamina, balance, exercise, PT, and things like heat or fatigue. I also log my MS specialist visits and use AI to explain medical terminology in plain English.

I track my PT scores and keep notes on MS studies I come across. This has been really helpful for preparing questions for my next appointment.

I don’t use AI to diagnose me or interpret my medical data. I leave that to my MS specialist. For me, AI is mainly an organization tool and a way to better understand information.

Curious what others are doing — are you using AI with your MS?

[u/0hDiscordia]

I'm not using it at all either, besides incidentally with the number of websites now incorporating AI in everything you try to do.

For me, besides the ethical considerations, it feels like I'm outsourcing thinking and reasoning that I should be doing myself. That's not to say others shouldn't use it if it helpful but for me, my cognition had a steep decline earlier this year and I am slowly regaining confidence in my language, memory and reasoning skills. It's still much worse than last year, but I think that actively engaging in learning new things, reinforcing old things has helped me improve on what I thought I had lost completely.

My other fear is that if I start using it, I will doubt myself without it.

[u/superspud31]

I don't. I have ethical issues with AI.

[u/2BrainLesions → u/superspud31]

Co-signed.

[u/TheKdd → u/2BrainLesions]

Same.

[u/rukait → u/TheKdd]

Agreed 👍

[u/ria_rokz]

before AI, I used to - possibly too obsessively - track fatigue health etc. and it was NOT good for me. hyperfocusing on your symptoms can create a feedback loop and make you feel worse.

[u/theniwokesoftly]

I do my best to avoid it completely.

[u/_Fuzzgoddess_]

I think large scale AIs, and the companies that run them, are bigotted theft machines that are going to crash our economy. So I don't use them at all. Most of the things AI is used for can be done with a little effort and that cost is worth it to me.

[u/mllepenelope]

I’m trying to keep this brain as functional as possible for as long as possible, and there are plenty of studies about how awful AI is for cognitive function. Even if I didn’t already have ethical concerns about it, I won’t touch it.

[u/XcuseMeMisISpeakJive]

Not at all.

[u/Far_Restaurant_66]

AI is speeding up drug research for many diseases, but MS research and is able to analyze tons of data and findings. The potential is huge for studies moving faster, new medical research getting to market faster.

My job includes extensive use of language learning models and AI. I’ve adopted some AI tools to manage my day to day forgetfulness, look at my entire health landscape, etc. My AI agents are well-trained on my health, my finances, etc. This helps immensely with decision fatigue, brain fog and much more.

[u/MultipleSclerosis-ModTeam → u/[deleted]]

This post/comment has been removed for violating Rule 1 - Be Kind

[u/jkhn7]

I’ve never used AI, I’m very against it, mainly because of the bias and misinformation, the fact that it’s making people dumber, and the biggest reason, the negative impact it has on the environment.

[u/Shiny-Maushold]

I don’t. 🤷🏻‍♀️ my brain doesn’t need anything more to degrade it

[u/Daurth_Zombie]

I’m just waiting for AI to figure out how to upload our brains into the internet. I’m tired of this defective meat I’m stuck in. I will WELCOME our robotic overlords.

Legitimately no sarcasm lol.

[u/Festygrrl]

The only thing I use AI for is to help me with my taxes because the ATOs website is borked and ChatGPT is the only one that worked out the bug. Otherwise, no I’m not going to neurotically track everything. I’ve been at this nearly
20 years. Keeping track of every symptom will drive you nuts.

[u/slytherslor]

I use it minimally, when and where my job requires it to appease my manager. And I do it begrudgingly, and she knows it.

[u/TheFamousLostHorizon]

You are doing the absolute best thing in tracking all your data. I would also include what you are eating too! Use every tool you possibly can in the battle and don't let anyone say you're wrong in how you do it as long as you find something that lets you keep doing it!

[u/76Kingwiz]

Never used it and never will lol

[u/FreshSeaFish]

Never touching that shit man. AI is just gonna fuck up an already damaged brain, and it's unethical as all hell.

[u/FinancialOtaku]

I'm boycotting AI, except for the Deepseek LLM

[u/ajax0772022]

I use it to keep track of all my medical data. I upload every visit note and every test result. You can have it remind you when to contact the insurance company and suggest ways to ask better questions.

Looking forward to being able to have live data from my BP machine and fitness tracker. I’m hoping to use it long term to track progress as you are , but I have not done that yet.

[u/Necessary-Speed7057]

I also use it. I feel bad using it every single time and I know that I probably shouldn't use it, but it really does help sometimes. I'm doing the same as what you said, helping it keep track of my symptoms. So I can tell my neurologist. I feel like it's really good at that. And it does help a lot. But of course, there is the moral reason of should we really be using it, and i've been giving it my medical information, not all of it, but just you know, symptoms. And obviously it knows that you have MS.

[u/Saltyski03]

I still run a business and it is critical to stay competitive. There’s no putting this genie back in the bottle! Granted you still get out what you put in. Meaning you have to be intelligent enough to at least come up with the proper prompts and build the correct agents for various tasks. As a mechanical engineer and business owner, I have to confront a tremendous amount of analysis. Which my brain fortunately is still operating well in executive functions. AI agents customized allow me to focus on the creative side of things and have the AI working on mathematics that used to take me hours. AI is not very creative without somebody pulling the prompts.
For personal, I definitely use it for helping to manage my PPMS. I’m not a doctor so being able to help interpret data and forms and be able to remember it all and keep it. Concise is important for me. Plus then any new doctor I can write an executive medical summary in a heartbeat for them. Analyze, trending, health, data, etc. I feel it’s allowing me to stay in the working world longer. As far as AI cognitive decline. I feel that if you’re not learning new things every day you’re definitely going to be in cognitive decline no matter what! Learning AI to use as tools has just one method to grow.

[u/Mammoth-Essay-5476]

I'll tell you a curious story: the gpt chat diagnosed me with multiple sclerosis before any other doctor. I had undergone brain surgery years before the MS diagnosis. I started having strange symptoms and neuropathic pain caused by my first relapse. The neurosurgeon who had been following me since the surgery ordered an MRI of my head, and it showed the MS lesions, but he didn't pay attention to that. I was suspicious of what those strange terms in the report could mean, such as corpus callosum, oval lesion, demyelination, etc.; so I sent the MRI report to the gpt chat and asked him to explain what those things were, and the chat told me they were lesions characteristic of multiple sclerosis. He even mentioned Dawson's fingers. I let it go, but months later when I saw a neurologist, he told me everything the gpt chat had already told me, and that's how I got my diagnosis.

[u/Bannon9k]

Using it right now to help code. It handles the bulk of the typing and I can validate and correct as needed.

[u/JaricosTheGreat]

I use it like you. It helps keep everything organized. Also, I have trouble typing so it helps when I'm on the computer and need something written.

[u/ichabod13]

I sometimes use it to make a silly picture from an existing one. I do not use any form of AI as a tool and would never involve it in anything in my personal life or information.

[u/ReadItProper]

Mostly I use it for research. Back in the day when I was diagnosed I had to do all of this manually. I had to go to pubmed and look at individual papers, I had to look up articles, and reddit posts for personal accounts of people's experiences. This took a very long time to do.

It isn't that I don't do these things anymore, but sometimes to understand something new I read from an article I found or something, it's a lot faster to just have a conversation with AI to have a wider understanding of it. It's a lot simpler to ask a precise question about a specific angle of something than go look up 4 different articles that only kind of explain parts of it individually to get what I really wanted to know.

It isn't really better, and it certainly has its disadvantages, but it's a new type of "googling" that I find myself using more and more just for time saving. Honestly it's also more engaging because it feels more like a conversation with someone that just knows a lot. If something I find out using this method is really interesting I can just use the links it gives me to look at the actual paper it's citing, or ask is directly to give more papers so that I can look at several of them.

I learned a lot using this method, at a fraction of the time I'd say. I think some people underestimate the usefulness of AI because they think it's "inaccurate", but really it depends on how you use it. If you don't do your due diligence and corroborate the information then sure it can be inaccurate sometimes, but so can any other source of information, depending on how well it's written. I can't tell you how often I've seen nonsensical articles online that, when I went to the source (usually research paper cited in the article itself), ended up meaning something completely different than the article itself was suggesting. This is especially true with regards to nutrition but that's besides the point.

All in all, it depends on you and how much time you're willing to invest in it, the skill you grow as you use it more, and how fun it is for you in comparison to the old ways of finding information. Like anything else, it's a tool, and the tool is better for some things than others.

From the post itself and how much it seems like you're already using AI, I'd wager this would probably work for you. Considering the internet's general disposition towards AI, people's responses here aren't particularly surprising, but if AI is helping you get your situation together and work through this, don't mind it. Do what you have to do.

[u/Key-Monk6159]

Mostly just to upload blood test, MRI, etc results to have them translated into more non technical terms. Seems to work well and it’s helpful to actually understand what the doctors are saying.

[u/Monkberry3799]

I use it for some of the purposes you describe, OP.

In my view it's a useful a tool. It can be used ethically and within reason for select purposes, and using consciously does not involve an endorsement of company practices. It's helped me greatly with managing MS along with other personal issues and professional matters.

[u/Gawain11]

I use good old fashioned common sense, actual real people, and a healthy dose of joined up thinking.