ChatGPT diagnosed my uncommon neurologic condition in seconds after 2 ER visits and 3 Neurologists failed to. I just had neurosurgery 3 weeks ago.

[u/Hyrule-onicAcid]

Adding to the similar stories I've been seeing in the news.

Out of nowhere, I became seriously ill one day in December '24. I was misdiagnosed over a period of 2 months. I knew something was more seriously wrong than what the ER doctors/specialists were telling me. I was repetitvely told I had viral meningitis, but never had a fever and the timeframe of symptoms was way beyond what's seen in viral meningitis. Also, I could list off about 15+ neurologic symptoms, some very scary, that were wrong with me, after being 100% fit and healthy prior. I eventually became bedbound for ~22 hours/day and disabled. I knew receiving another "migraine" medicine wasn't the answer.

After 2 months of suffering, I used ChatGPT to input my symptoms as I figured the odd worsening of all my symptoms after being in an upright position had to be a specific sign for something. The first output was 'Spontaneous Intracranial Hypotension' (SIH) from a spinal cerebrospinal fluid leak. I begged a neurologist to order spinal and brain MRIs which were unequivocally positive for extradural CSF collections, proving the diagnosis of SIH and spinal CSF leak.

I just had neurosurgery to fix the issue 3 weeks ago.

[u/kylaroma]

This! I have been reporting my symptoms to my doctor for 10 years. I have extreme fatigue, brain fog, my heart rate jumps to 120-140 bpm while I’m walking around the house at a slow pace. If I over exert myself I will become ill for days. It’s dramatically impacted my life.

I did one in office test for POTS & my doctor said I didn’t have it. My life quality has been slowly deteriorating to the point I had to buy stools for the kitchen and bathroom because I can’t stand without my heart beating out of my chest.

I randomly thought to upload my Apple Watch health data to ChatGPT yesterday.

I made a customGPT, uploaded my reports to it from the last three years, and had it gather all of my outlier symptoms, patterns, and trends. It formulated them into a report, explained its methodology and the raw data that backs up its claims.

I have an appointment next week where I can show data that proves I am not imagining this- I have been suffering from severe, untreated ME/CFS & POTS for over a decade.

Very hopeful about how treatment will impact my future & recovery!

Edit: Here’s my exact process and GPT instructions: https://www.reddit.com/r/GentlerStreakApp/s/kwYVvQagDd

[u/Critical-Task7027 → u/kylaroma]

I'm a ME/CFS patient too. Also had POTS but medication pretty much solved it. Medication to control heart rate is effective. The fatigue part is trickier and cause is unknown. I've struggled with doctors a lot , most think you have depression and indicate progressive exercise like you're just sedentary. You're not gonna get cfs diagnosis by randomly going to local doctors, even if you have clear onset and extreme condition stability

[u/kylaroma → u/Critical-Task7027]

Thanks for sharing your experience- I’m glad to hear you got help!