u/MiserablePermit5776

I’m an 18-year-old female and I’ve been dealing with a rapidly worsening cluster of unexplained symptoms for almost 3 months. My entire life is basically on pause right now. I’ve been to multiple hospitals and seen GI, rheumatology, neurology, ENT, and ophthalmology. I’ve also been hospitalized multiple times. Across different hospitals, many labs have been repeated over and over to rule out anything and everything possible.

Despite all of that, I still don’t have answers and I feel like I’m getting worse.
At this point, I’m struggling with basic daily functioning. Some days I can barely walk due to numbness and weakness, and I’m having frequent systemic “flare-ups” that come on suddenly.

Testing/workups so far:
Extensive bloodwork/labs repeated multiple times — all largely normal
Endoscopy + colonoscopy — normal aside from minimal nonspecific findings
Mouth ulcer biopsy — inflammation present but non-diagnostic
EEG done, but it did NOT capture one of my seizure-like episodes
Multiple ER/hospital evaluations without a clear diagnosis or admission finding
Other broad autoimmune/inflammatory workups have not shown anything definitive

I also have celiac disease, but doctors feel it’s unlikely to be the cause since I’m very strict with my diet and scopes show minimal inflammation.

Main symptoms (progressively worsening):
Severe fatigue + post-meal crashes
Dizziness, shakiness, near-fainting episodes
Numbness and weakness (sometimes I struggle to walk)
Chest pain and very unstable/racing heart rate episodes
Nausea, bloating, digestive changes (including persistent bright green stool)
Circulation issues
Mouth ulcers + very sensitive/bleeding gums
Severe hot sweats / temperature dysregulation
Consistent severe bad breath that has become very noticeable and embarrassing
Daily seizure-like episodes where I remain conscious for 20–30 minutes

Neurology has said it’s probably FND, but it was essentially left at that with no clear explanation, treatment plan, or referrals. I was not given next steps or any structured plan for what to do about it.
I also had an EEG, but it didn’t capture one of my episodes, so nothing conclusive came from it.

I feel frustrated and stuck because I’m still declining but not getting a clear direction forward. I’m wondering if this could be multiple things happening at once rather than one diagnosis, or something being missed despite all the testing.

I’m not necessarily looking for a diagnosis — I really just need advice on what next steps to push for or what else I should be asking my doctors to investigate, because I feel like I’m running out of options.

Has anyone experienced anything similar or have suggestions for what direction to take next?

I’m an 18-year-old female and I’ve been dealing with a rapidly worsening cluster of unexplained symptoms for almost 3 months. My entire life is basically on pause right now. I’ve been to multiple hospitals and seen GI, rheumatology, neurology, ENT, and ophthalmology. I’ve also been hospitalized multiple times. Across different hospitals, many labs have been repeated over and over to rule out anything and everything possible.

Despite all of that, I still don’t have answers and I feel like I’m getting worse.
At this point, I’m struggling with basic daily functioning. Some days I can barely walk due to numbness and weakness, and I’m having frequent systemic “flare-ups” that come on suddenly.

Testing/workups so far:
Extensive bloodwork/labs repeated multiple times — all largely normal
Endoscopy + colonoscopy — normal aside from minimal nonspecific findings
Mouth ulcer biopsy — inflammation present but non-diagnostic
EEG done, but it did NOT capture one of my seizure-like episodes
Multiple ER/hospital evaluations without a clear diagnosis or admission finding
Other broad autoimmune/inflammatory workups have not shown anything definitive

I also have celiac disease, but doctors feel it’s unlikely to be the cause since I’m very strict with my diet and scopes show minimal inflammation.

Main symptoms (progressively worsening):
Severe fatigue + post-meal crashes
Dizziness, shakiness, near-fainting episodes
Numbness and weakness (sometimes I struggle to walk)
Chest pain and very unstable/racing heart rate episodes
Nausea, bloating, digestive changes (including persistent bright green stool)
Circulation issues
Mouth ulcers + very sensitive/bleeding gums
Severe hot sweats / temperature dysregulation
Consistent severe bad breath that has become very noticeable and embarrassing
Daily seizure-like episodes where I remain conscious for 20–30 minutes

Neurology has said it’s probably FND, but it was essentially left at that with no clear explanation, treatment plan, or referrals. I was not given next steps or any structured plan for what to do about it.
I also had an EEG, but it didn’t capture one of my episodes, so nothing conclusive came from it.

I feel frustrated and stuck because I’m still declining but not getting a clear direction forward. I’m wondering if this could be multiple things happening at once rather than one diagnosis, or something being missed despite all the testing.

I’m not necessarily looking for a diagnosis — I really just need advice on what next steps to push for or what else I should be asking my doctors to investigate, because I feel like I’m running out of options.

Has anyone experienced anything similar or have suggestions for what direction to take next?

I’m an 18-year-old female and I’ve been dealing with a rapidly worsening cluster of unexplained symptoms for almost 3 months. My entire life is basically on pause right now. I’ve been to multiple hospitals and seen GI, rheumatology, neurology, ENT, and ophthalmology. I’ve also been hospitalized multiple times. Across different hospitals, many labs have been repeated over and over to rule out anything and everything possible.

Despite all of that, I still don’t have answers and I feel like I’m getting worse.
At this point, I’m struggling with basic daily functioning. Some days I can barely walk due to numbness and weakness, and I’m having frequent systemic “flare-ups” that come on suddenly.

Testing/workups so far:
Extensive bloodwork/labs repeated multiple times — all largely normal
Endoscopy + colonoscopy — normal aside from minimal nonspecific findings
Mouth ulcer biopsy — inflammation present but non-diagnostic
EEG done, but it did NOT capture one of my seizure-like episodes
Multiple ER/hospital evaluations without a clear diagnosis or admission finding
Other broad autoimmune/inflammatory workups have not shown anything definitive

I also have celiac disease, but doctors feel it’s unlikely to be the cause since I’m very strict with my diet and scopes show minimal inflammation.

Main symptoms (progressively worsening):
Severe fatigue + post-meal crashes
Dizziness, shakiness, near-fainting episodes
Numbness and weakness (sometimes I struggle to walk)
Chest pain and very unstable/racing heart rate episodes
Nausea, bloating, digestive changes (including persistent bright green stool)
Circulation issues
Mouth ulcers + very sensitive/bleeding gums
Severe hot sweats / temperature dysregulation
Consistent severe bad breath that has become very noticeable and embarrassing
Daily seizure-like episodes where I remain conscious for 20–30 minutes

Neurology has said it’s probably FND, but it was essentially left at that with no clear explanation, treatment plan, or referrals. I was not given next steps or any structured plan for what to do about it.
I also had an EEG, but it didn’t capture one of my episodes, so nothing conclusive came from it.

I feel frustrated and stuck because I’m still declining but not getting a clear direction forward. I’m wondering if this could be multiple things happening at once rather than one diagnosis, or something being missed despite all the testing.

I’m not necessarily looking for a diagnosis — I really just need advice on what next steps to push for or what else I should be asking my doctors to investigate, because I feel like I’m running out of options.

Has anyone experienced anything similar or have suggestions for what direction to take next?

I’ve been dealing with a cluster of unexplained symptoms for almost 3 months and I’m starting to feel stuck and overlooked. I’ve seen GI, rheumatology, neurology, ENT, and ophthalmology. I’ve also been hospitalized multiple times, but I’m usually discharged without clear answers.
At this point, I’m struggling with daily functioning — some days I can barely walk because of numbness and weakness, along with frequent “flare-ups” that come and go.

Tests so far:
Extensive bloodwork/labs normal
Endoscopy + colonoscopy normal (minimal nonspecific findings)
Mouth ulcer biopsy (inflammation but not diagnostic)
Other workups haven’t shown a clear cause
I also have celiac disease, but doctors feel it’s unlikely to be related since I’m very strict with my diet and there’s minimal inflammation on scopes.

Main symptoms:
Severe fatigue and post-meal crashes
Dizziness, shakiness, near-fainting
Numbness/weakness (sometimes limits walking)
Chest pain
Nausea, bloating
Circulation issues
Mouth ulcers + gum sensitivity/bleeding
Hot sweats
Consistent bright green stool
Episodes that feel like “flare-ups”

I’m also having daily seizure-like episodes where I remain conscious, lasting ~20–30 minutes. Neurology mentioned possible FND, but nothing is confirmed.

I keep wondering if this could be multiple things happening at once rather than one diagnosis, or something being missed. I still wonder about Behçet’s, but it was mostly ruled out because my ulcers are only in my mouth.

I feel like I’m losing function and not getting closer to answers. Has anyone experienced anything similar or have ideas on what else might be worth investigating?