r/askneurology

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 22m, I have gotten 12 EKGs,8 chest X-rays,a ton of blood work, an echocardiogram, and had a heart monitor for a week, but everything came out normal.
I’m going to my clinic tomorrow and I’m gonna ask for copies of all my bloodwork to see if they tested me for any deficiencies. My cardiologist and doctor told me it’s due to high stress and anxiety, and that my heart is healthy, these are my symptoms:

\-Chest pain/discomfort like if someone was squeezing my heart that comes and goes
\- Heavy heart beats that I can feel in my neck, back, and chest especially when lying down
\-Pounding heart beats upon standing, when awakening, after eating, or making sudden movements
\-Lightheaded upon standing, bending over or after squatting
\-Fast heart rate when walking around the house, or doing basic chores
\-Slow hard beats when startled, excited, or jump scared (Random drops in heart rate)
\-Sensation of blood rushing through my chest, up into my head when standing
\-Shortness of breath that comes and goes, especially when doing something physical.
\-Tingly/hot feet when standing for long periods of time
\- Random chest discomfort or what feels like BP drops when I’m up walking around
\-Heart beats slow and fast after sitting down when having episodes of tachycardia
\-Fatigue
\-Extreme episodes of anxiety
\-Exercise intolerance
\-Depression
\-Stress
\-Sweaty hands and feet
\-Pains in chest,back, and neck that come n go
\-Feeling weak on some days

All of this is worse after a night of drinking alcohol, or when consuming caffeine. I also asked my cardiologist earlier today if this could be dysautonomia like pots but he said no and told me my BP is never low and that people with pots have lower BP or drops. I can’t work, exercise, or clean because of this and it’s effecting my life. I’m gonna see a therapist this Friday as well to get some mental help.

In 2020 I started having intermittent neurological issues. A flare up pattern that is seemingly triggered by getting sick or foods (histamines?). For years I feared Parkinson’s or ALS, or MS. Yet scans, tests etc all normal.

Fast forward to the last 2 years. I’ve had flares that get worse and longer each time. Before it was once every 2-3 years.. they typically lasted a month or two. Well this time I’m on 10 months of a “flare”, afraid that maybe now this is permanent.

Of course, all labs and tests seem normal outside of HS-CRP of 7.2 (about 7x normal), which is a general inflammation marker. Autoimmune labs all clear, bloodwork perfect, A1C in the 5’s… so not diabetic related.

I’m starting to lose faith I’ll heal. I’m in a vicious cycle. Doctors understandably always suspect anxiety, but it’s not (though these attacks DO generate anxiety afterwards). The symptoms are as follows:

Nerve pain that is often much worse at night. It can range from sharp pains, to numbness, to burning. It’s both sides of the body, upper and lower body. I also get HR spikes that feel like adrenaline surges randomly, but especially when standing up or eating. Luckily I’m on Metoprolol which seems to put a cap on it (before upping dose to 50 mg HR could go to 140-160 briefly, now it caps around 115-120).

Another odd thing I get is full body internal tremors. Normally that lasts a few minutes but last night it was 3-4 hours until I fell asleep. I have facial numbness sometimes, lots of headaches and fatigue. The worst symptom though is it’s nearly impossible for me to hit deep sleep. I only get 30-60 minutes deep sleep and it’s always at the beginning.

I believe due to the bad sleep and nerve stuff… I’m always sore. Full body soreness like I was in a car accident. It’s like my body can’t heal.

I’m willing to fight years if I have to, but I’m just scared if it continues down the progression path… I will end up dying from it somehow. When I plugged all symptoms into every AI they came up with two common answers.

• Post-viral dysautonomia / hyperadrenergic
• Long Covid with Small fiber neuropathy

I guess what I’m hoping to find here is people who have beaten this or have tips for me. Or which of these two conditions you guys have seen more commonly here. I would do anything for help.

Hi there, new to this subreddit. I’ve had foot neuropathy (mostly in left foot but also at times in my right) for many years which I’m pretty sure is emanating from scoliosis and stenosis (I’ve had X-rays and MRIs but no dr. has ever been able to confirm exactly what’s causing it). I’ve been on 600 mg gabapentin for quite a while(prescribed in the U.S.) but I’m in Barcelona now and neurology Dr suggested that I up my gaba intake or try pregabalin, so I decided to try the latter, taking 50 mg morning and again at night.

I’m just wondering whether anyone else has tried both and if so what was your experience with them? Did you find one worked better than the other? Did you need to up the dosage before feeling any results?

I've had recurring brain zaps for the past few years that are getting much worse and more frequent. It feels like a giant chill running down my spine starting at the base of my skull and traveling out towards my limbs. These usually make my limbs jerk uncontrollably and are accompanied with a verbal tic more often than not. I get them multiple times a day, mostly at night, and sometimes they happen every few minutes. My doctor is insistant that these are not a result of my biploar meds, and that they could be a sign of something neurological happening. Is anyone familiar with these? Are these something I need to be worried about?

I recall reading about a study out of the military looking at long term effects of exposure to sound. There had been a shooting involving a servicemember who had seen no active combat and nobody suspected of PTSD. But he worked on an artillery training range for years, and an autopsy revealed innumerable tiny areas of damage in his brain. The hypothesis was that years of exposure to loud noise and pressure from the blasts (at levels considered to be "safe") built up and led to a psychotic episode.

My question is:

1. Does this hypothesis carry any weight within the neuroscience community, and if so,

2. Can loud sound from concerts, souped up car stereos, etc. lead to the same thing?

Posting for my dad. He’s a 52M with ESRD/CKD on dialysis for 17 years. Current medications: Zemplar, PhosLo, Sensipar, Losartan, Carvedilol, and Amlodipine.

For about the past year or so he’s been dealing with headaches that have progressively worsened and are now significantly affecting his sleep and mental health. A few months ago he went to the ER and was prescribed gabapentin and referred to neurology. Neurology later started him on amitriptyline, but after a couple months there has been no improvement.

He still occasionally takes gabapentin when the headaches become severe because it helps him sleep, but he dislikes the next-day grogginess. At this point he’s mostly taking Tylenol nightly (2 before bed), but he’s concerned about the safety of taking it long term. He will never go past the recommended amount indicated on the bottle.

He recently had an MRI ordered by neurology, and the report mentioned findings concerning for a cerebrospinal fluid leak. We’re trying to better understand:
- What exactly does a CSF leak mean in this context?
- Can this be fixed?
- While waiting for his next neurology appointment, is nightly Tylenol generally considered safe in dialysis patients if taken within recommended dosing limits, or are there headache treatments that are safer in dialysis patients?

Hoping for some general insight on what he can do in the meantime while we wait for follow-up.

I’m currently seeing an cardiologist and I’m waiting for my echo and heart monitor results, but I’m just wondering if anyone here is experiencing the same thing or know what It can be. I’m tired of going to the hospital and being told it’s just anxiety and that I have to see a cardiologist, ive been dealing with this for so long and no answers or help. Here’s what I’ve been experiencing:
\-Fast pounding heart beats upon standing, when awakening, after eating, or making sudden movements
\-Lightheaded upon standing, bending over or after squatting
\-Fast heart rate when walking around the house, or doing basic chores
\-Slow hard beats when startled, excited, or jump scared (Random drops in heart rate)
\-Sensation of blood rushing through my chest, up into my head when standing
\-Shortness of breath when doing anything physical
\-Tingly/hot feet when standing for long periods of time
\-Heart beats slow and fast after sitting down when having episodes of tachycardia
\-Fatigue
\-Extreme episodes of anxiety
\-Exercise intolerance
\-Depression
\-Stress
\-Sweaty hands and feet
\-Pains in chest,back, and neck that come n go
\-Feeling weak on some days
\-Recently started getting more skipped beats
\-Pressure in upper left abdomen when lifting

Hi, since March 16th I’ve been living in hell. Numerous trips to a&e, GP appointments and living through the worst thing ive ever experienced. At the end of March on my fourth trip to a&e the doctor there told me they suspected it’s a hemiplegic migraine.

I feel like I’m having a stroke every day almost. I’ve got permanent damage to my right eye. That hasn’t recovered, I wear glasses now. I didn’t before. I’ve lost myself, I barely recognise who I am anymore and I’m finding it incredibly hard mentally. Before this started I thought myself of quite intelligent (I’m a writer) and now I’ve become someone who can’t even comprehend creating something with my current brain.

It’s ruining my life. Work triggers is, walking triggers it, doing chores triggers it, going to the gym triggers it… basically being alive triggers it.

They’ve given me a neurology appointment… it’s August 25th. This has been happened every day since March 16th. So I don’t have a formal diagnosis and I’ve also had zero tests done. Not one. They just keep offering pain killers and sending me off back home even though my last attack occurred without a headache before, during or after and it was awful. I thought I was about to die. I could feel the artery or veins in my neck trying to escape out the side and my throat was so swollen I could barely swallow water.

I don’t know what to do, or how to manage this. I’ve tried desperately to get my neurology appointment brought forward but they’ve told me they can’t see me any sooner than that. I’m haemorrhaging money, I’ve got no life, I can’t work, my flats a disaster and my fitness has never been worse as I can barely get off the sofa without falling down due to the weakness in my right leg, loss of balance, dizziness etc..

So if anyone can give me some advice I’d really appreciate it as I’ve asked the hospital and my gp repeatedly for some kind of management plan or preventative medication but they’ve not offered me any help and I can’t get the preventative meds without formal diagnosis and that can’t happen until August 25th when I finally see a neurologist.

Thank you (a very scared and stressed woman who is at breaking point)

My first symptoms started 6 years ago. It started with these symptoms:

\- inner trembling in hands and wierd strong puls

\- crazy muscle twitching all over the body ( now it is just few per day)

\- tinitus,

\- full numbness in hand when I wake up

\- strong brain fog

I got all these symptoms in first 4 months and it was nighmare.

After 1 year I got new symptom: CONSTANT INTERNAL TREMORS, it started in both foots and over time it spread all over body but strongest in legs.

So for years now I have these symptoms every day:

\- constant internal tremors/vibrations full body

\- constant tingling feets( or I am just feeling internal vibrstions there)

\- muscle twitching, few daily so not crazy as when it started

\- tinitus

\- easily getting numbness in extremities after unpleasent position

\- severe brain fog, general anexity and social anxiety

\- chronic stress and rumination

\- low stamina and stiff calf after walking fast(but I am not phisically active)

Last 3 years only internal tremor is spreading, rest are the same.

So last year I had clean bloodwork, clean EMG, clean MRI of brain with contrast and clean full spine MRI..

So MS was ruled out, because after 5 years of all these crazy symptoms it must show something on MRI if it is MS, right?

Now I worrie that they maybe missed soomething, it was 1.5 tesla mri and it was just read from regular radiologist. Maybe I will send CD to some Ms specialist or to repeat tests again.

But still with all these symptoms they would esasily see something. For example for severe brain fog symptom they would see lession on the brain, right?

Not sure anymore

Hi, I am writing to try to explore treatment possibilities to discuss with the doctor of a close relative of mine who is evidently suffering from either an akinetic crisis or NMS.

Brief background— 68 m history of normal pressure hydrocephalus and possible Parkinson’s like syndrome but no clear Parkinson’s dx. Presented to ER with intractable hiccups per PC doc to rule out stroke or cardiac causes. Workup was ok. Given dose of metoclopromide to treat hiccups, which worked temporarily. Next day began experiencing severe weakness and collapsed at home several times. Returned to ER and found to have fever. Admitted with suspicion of sepsis and at some point given Thorazine.

Days 1-3 of hospital admit given high dose broad spectrum antibiotics and fever control. Fever oscillated up to 103 degrees. Patient became more rigid and unable to walk. Shunt tapped day 4 to assess for infection. Day 5 improvement and could stand and walk 10 feet with assistance.

Slowly began to lose the ability to walk, use arms or speak over the course of a few more days. Transfer scheduled to higher level hospital which took two days. At higher hospital full assessment took another couple of days. After CTs, MRI of brain and spine, EEG and PET scans, nothing remarkable (eeg showed “mild encephalopathy). Blood exams unremarkable. CSF and blood cultures with no growth and meningitis panel negative. Antibody (for autoimmune encephalitis) panel pending but PET didn’t indicate encephalitis.

At this point they believe it is Parkinsonism triggered by the acute illness at the beginning and the medication. They began dose of sinemet 25/100 three days ago with very mild improvement in alertness. Still trouble speaking but oriented x3. However dysphagia developed and the had to insert NG tube so missed day 4 of sinemet. Back on tomorrow with plan to transfer to skilled nursing in 2 days or so.

My question is: I feel like the therapeutic treatment he’s received has been feeble and I would like to know that treatment is working (confirming the suspected diagnosis) before transferring to SNF. Otherwise we still don’t know what the root cause is. What other treatments could be explored? Prior to the day he saw PC doc, he was living independently, walking with cane, climbing stairs, using phones and technology. Now physically can’t do anything. Docs have given us a hopeful prognosis but I fail to see what it is based on… please advise what I should discuss with them before we don’t have access to neurologists every day and he’s under the care of one medical director for the whole SNF.

Many thanks.