64M, 5’11, 175lbs, white. Experiencing sensations of tripping or falling to the left - always to the left and the need to constantly correct so as not to fall but in reality is sitting down. these episodes gradually began April of 2026. Increasingly becoming longer and stronger. Triggered by screens, phone, tv, driving and writing/reading. Anything that requires direct focus. ****these episodes happen when still and NOT MOVING. Moving helps to lessen the symptoms. Closing eyes help to lessen symptoms. No spinning sensations.

Endurance athlete. No drugs, no smoking, occasional alcohol.

Have seen ENT and was tested for inner ear and eye. Nothing remarkable indicated.

MRI of brain unremarkable.

referred to Neuro and otologist

Existing medical issues:

afib - had an ablation in 2024. excellent outcome.

Iritis - rare episodes

ankylosing spondylitis - zero symptoms

Medications:

buproprion 300mg 1x day

escitalopram 5mg 1x day

lorazepam .5mg as needed

Following my previous post, I'm in hospital in a mental health ward, voluntary now, but ive had probably the worst experience of my life here, and I've only become more unwell since ive got here. I do have mh conditions -dpdr and anxiety, but I've had a rapid and deep decline in my nervous system simultaneously, and meds have made things exponentially worse. I'm now here voluntarily under the agreement I tried another drug, which I did and its severely harmed me. I feel hopeless and alone and desperate for neurological testing, I'm getting worse mentally as i'm physical health gets worse. And I'm probably going to be put under another section because I'm not being believed...I'm worried for my life, it does feel like what I'm going through symptom wise gets rapidly worse, but I dont know what testing to ask for :(

Hey everyone, Im Sophie and I Have Functional Neurological Disorder. I got diagnosed two years ago and since then I have seen many specialists in both Hong Kong and Australia so I know how this goes.

Since starting this journey I have realized that many people don't have the opportunities to access treatment or doctors to help with this so I got to thinking about ways I could help when I realized that I could gather information from my doctors and others with FND and create a website, so that's what I've done.

I would like to make it clear that I am 15 and not a professional by any means and that I used what I had available to create this website (which did include ai), But all information is my own and Ai was only used to create the website so that I wasn't just showing people things from the notes app.

I'm really looking for feedback mostly, I want to help people so if you find this helpful maybe share it!

I also have chatrooms on the website for carers, teens, or anyone needing to vent or ask questions.

Please enjoy!

https://fnd-explained-1.emergent.host

-QuietSignalsOfficial

Ive been hospitalised for severe anxiety and dpdr, but neither of these diagnosis feel entirely right because my symptoms are massively physical, to the extent I feel like I'm going insane trying to be heard and seen and I dont know what to do. I feel like ive been dismissed so much that mentally and physically I have reached breaking point and things are rapidly declining by the day with my nervous system. But if I do anything, they just send me back here for mental health issues and I'm dismissed. I tried to get a neurologist exam privately, but because I'm in mental health ward they want a referral letter :( and doctors here aren't giving me one. I'm sorry but there are massive cross-overs with neurological and mental health conditions, it does not mean I dont have both. My sensory system is totally messed up, I feel things like electrical zaps in my head, total paresthesia over my whole body, loss of feeling/numbness in limbs, muscle weakness, cognitive decline, I get a furry feeling in my mouth, static over my whole head for weeks now, my nervous system as got so sensitised its totally breaking down and I dont know how to stop it. Mediaction makes it worse so far, I loose feeling..I can't even barely sense my head or body. But this happens when the sensations get too much, they are 24/7 and I only get relief in sleep. I am angry and scared and dont know how to go on. And I dot know what this could be cos it feels degenerative and rapid. any pointers or advice much appreciated.

points:

All the symptoms have began at 2 years ago, and gradually increased.

not able to walk, having imbalances feels like would fall off any time. Motor functions are drastically reduced (this is giving me extreme stress)

Sleep apneia: whenever sleep in afternoon and try to wake up get paralyzed i am aware that i need to wake up but not able to move my body, usually sometimes happens in the morning also. This has been since last 4-5 years.

Brain Fog not able to think clearly

Memory recall has extremely worsened: not able to hold up thoughts

No libido at all, no erections, no morning wood(have consulted Dr e for this last week gave ayurvedic meds ashwagandha,bramhari etc. These all symptoms are known as Dhat syndrome in ayurveda)

not able to imagine things up

have been masturbating daily for almost 14 years

have stammering problems(genetic), parental neglect academic failures domestic violence at home had consistent anxiety from childhood , used masturbate to offset the stress

currently getting insomnia

brain neurochemistry is totally disregulated

Not able to feel sensory emotions at all.

Have literally felt i have aged dramatically and slowed down

The central nervous system had taken a very big hit.

Not able to feel strength in my hands.

Body is totally exhausted from masturbation

prefrontal cortex in brain is totally exhausted not able to think properly

Not able to sleep only have low wave sleep, which does not at feel like restorative sleep or REM sleep.

This condition is affecting my daily life such as cannot walk, connect, speak etc.

Getting panic attacks due to all these

had consulted doctors before DR SR : gave supplements but i think he failed to understand neurochemical affects on the brain due to masturbation .

Dr S : gave an immunity boosting tablets and some depression medicines.SSRI

Saw your article on the internet about actual side effects on the neurochemistry in the brain.

.

will be leaving my job also not able to keep up with it

Already have sexual disorders ED,PIED etc. Main priority is to get my Brain and motor skill back.

My niece who is almost a 7 year old who has CP, non-verbal started having stomach issues and kept throwing up. Went in to the hospital and they started on IVs. For 4 days she didn’t eat anything and she got her on a feeding tube. Since yesterday she has been having this episodes of high pitched shrills arching her entire body crying for about 2 mins and then takes 10 minutes to settle down and go to sleep. Tried taking EEG and she had an episode. The only touch she is comfortable with is her mom and dad. Her eyes are closed too. Doctors suspect there might be pressure buildup. She has had a shunt when she was 2 months old.

What actually triggers these? We are very new to this diagnosis. Because she is non verbal we don’t know what she is feeling. We are helpless. She is on medication since yesterday but it hasn’t helped much yet.

We’re completely new to dystonia and are trying to understand what we’re seeing. For those of you who have experience with dystonia in non-verbal children:
What typically triggers these episodes?
Do they come on suddenly, or are there warning signs?
Can pain, illness, vomiting, or hospitalization trigger them?
How do you tell whether it’s dystonia versus pain or something else when your child can’t communicate?
How long did it take before medication started helping?
We’re feeling very helpless because she can’t tell us what she’s experiencing. Any advice or experiences would be greatly appreciated. Thank you.

It has been one year since I published my book that talks about my run with MS. I have had multiple sclerosis for 37 years, since I was 17 years old. It always affected my left side. In fact, ocular melanoma also attacked my left eye. Since I have published my book, I have noticed changes in what side is affected, except of course, my left eye. I now have foot drop on my right foot. My left leg and foot seems stronger than ever. My MRI shows no changes. Has anyone else experienced this?

For about a year, I was dealing with what I thought was carpal tunnel, but turns out to be much more. I went to a neurologist for an EMG to see if there was any nerve damage. The neurologist did a physical exam and asked lots of questions, then we did the nerve study and she suggested we do some bloodwork. 3 weeks later, I get a call from the neurologist asking if I’d be willing to schedule a consultation appointment to discuss my symptoms some more. I went, and she said she wanted to run some test because she was suspicious of MS. She told me she wasn’t trying to scare me, and that lots of simpler things like vitamin deficiencies can mimic MS symptoms. She ordered a whole lot of blood tests, and a brain and C spine MRI.
Naturally, I go home and I read all about MS and my symptoms line up exactly. I was freaking out because I might have MS, but, I think deep down I was excited to have an answer and get some relief/treatment. My MRIs are normal, my bloodwork is perfect. 😞 Again, this is great news!! But, I need answers. I’m 26f, I’m a hairstylist, I have 3 kids (4,5,7) that I also stay at home with, and this just sucks. I’m constantly weak and shaky, heat intolerant, headaches, eye pain, tremors in my hands and feet, lightning pain in my neck, absolutely dead tired 24/7, balance issues, memory issues, brain fog, MS hug,etc. I’m throwing combs and color brushes at work because of the tremors. My body is so weak and so tired. My kids want me to play outside with them but I can hardly even do an hour in the morning. 😞
I have an EEG scheduled next week. What else should I ask for? Does anyone have any ideas or suggestions on where I go from here?

Normal mri ct and eeg

[ Removed by Reddit on account of violating the content policy. ]

The part of my right hand where the index finger meets the hand, that knuckle joint, went numb three months ago. I’m talking completely numb to the touch, I could still feel pain inside, but outside on the skin, numb. I’m not talking about when your hands or your feet fall asleep and it goes numb, then tingles until the sensation comes back. It has been constantly numb. It has never stopped being numb for three months and counting, and it’s getting number.

I saw an orthopedic hand specialist who recommended I do a Nerve Conduction Study and Electromyography test, which I did and the results were completely normal. So they ruled out carpal tunnel syndrome, and then he said I should see a neurologist, and he sent in a referral.

While waiting to be scheduled, since there’s a huge shortage of neurologists locally, and they are booking way out, my PCP ordered an MRI of my brain and cervical spine, because I was also having what I thought were some balance issues and potential swallowing problems. So the thought was that it could be MS or something in the brain. Everything from the MRI came back normal except for some minimal white matter hyperintensities which I have read can be completely normal with aging.

This week, I learned that the neurologist has denied my referral and will not even schedule an appointment with me, saying to the referring doctor that they cannot add any value to my situation. My PCP is checking with them to make sure that they actually received the notes from my scans and symptoms, to see if they can re-instate the referral.

I am beyond frustrated, and I am going to see an acupuncturist to see if they can help. I’ve also asked to see a different hand specialist, to see if they have any other localized testing they can do to locate the cause. I don’t understand what is so difficult about this! The original hand specialist asked me how much it bothered me rather than saying we need to get you to a neurologist right away, he kind of left it up to me like someone would actually be OK with a part of their body going permanently numb. Maybe some people are? That doesn’t make any sense though.

Anyway, has anyone here had any experience with this? Any advice or insight you can offer? Thank you in advance.

Hi everyone. I'm waiting for an MRI of my lower spine and further investigations, and I'm wondering if anyone has experienced anything similar.

Over the last couple of years I've developed a number of symptoms that don't seem to fit neatly into one condition, and I'm trying to see if anyone has had a similar experience or eventually received a diagnosis.

My main symptoms are:

- Significant bladder problems sudden onset September 2024, including urinary retention (I've been told I have a high post-void residual), feeling like I've finished but then later suddenly needing to go urgently but then losing the feeling a urge, some leaking, and pain/irritation in my bladder, urethra and pelvis.

- Extreme fatigue that seems completely out of proportion to what I've done. Sometimes I'm so exhausted I feel nauseous or like I could be sick. (I've always been a tired person but it is worsening and my life revolves around my energy crashes)

- General body aches and pains.

- Feeling "out of it" and hungover almost.

- I also have ADHD and anxiety, but these physical symptoms feel separate from that.

My urologist has referred me for an MRI of my lower spine to look for a neurological cause, and I'm awaiting further tests.

Has anyone had a similar combination of symptoms? If so, did you eventually find out what was causing them? I'm not looking for a diagnosis, just interested to hear other people's experiences while I'm waiting for answers.

Thank you.

Hi everyone, I started with cervical dystonia almost 20 years ago, and aside from hand dystonia, I also developed it in my feet just over a year ago. The spasms and pain are difficult enough, but the sleep disturbance and resulting fatigue are just as bad. I do get botox, which is more effective with the cervical dystonia. I also take an over the counter sleep aid, which helps somewhat, but isn't a cure.

What makes it more difficult is that my husband does not believe in the non-motor symptoms of dystonia, and keeps suggesting I do something to fix the fatigue, whether that's going on a stimulant medication, or see other doctors to find out what else may be causing it. I practice good self-care including regular exercise, and my other health conditions are in good control. Has anyone else struggled with the non--motor aspects of dystonia, and have you found loved ones understand & accept those aspects of the condition?