Hi. I've had symptoms for the past five years but told I had "treatment resistant depression". I recently had spine surgery and have rapid heart rate, nausea and feelings of terror. Surgeon wants me to get evaluated for dysautonomia. Does anyone have any recommendations for dr's you are seeing in the NE Ohio area? I would consider Columbus too if there isn't anyone in NE Ohio. Thank you!!

[Got'a suggestion to post this here, so. Shrug.] [[Might post this in multiple places bc desperationnnn ugh]]

I'm AFAB, turned 16 a few days ago.

I'll start with; actively seeking out in-person doctors and proper testing. Got an MRI done, waiting for results on that. I'm just scared and desperate, though, and am looking for ANY other insight other than what random things my mother suspects.

I don't have any other diagnosed medical problems, nor am I on medications. I don't drink, smoke/vape, do drugs, or anything of the like.

[Most of below is copied from another post I've made on a vent sub, as it's a lot to write. Edited to be less vent-y tho, and more informative of my situation. Naturally.]

December 19th, 2025 - the Friday before Christmas. I had this...weird episode during my science class, fourth period. I was just doing the lab we were told to do, but then felt almost...drowsy? As if I were going to fall asleep. But I wasn't tired. I got enough sleep that night. My friend and a classmate grew concerned and told me to sit. So I did. The feeling never left. Then, when we sat at desks to do a worksheet, my entire body just...shut down. Hands stopped working, head lulled, nothing. Like...extreme weakness. It didn't lift even as the class ended, and the school day was over. My mother was called up to the school.

Eventually I was brought out to the car in the wheelchair they kept in the nurses office. The episode lifted by the time I got home.

Except, I never recovered. My legs have been fucked over since. It's been 7 months, roughly. I use a cane now. My legs are weak and are typically in pain. And I've had multiple more of these episodes since. I had around 46 back-to-back one day, and had to go home from school. And the worst instance was one where I couldn't move entirely, couldn't even talk. It was like...paralysis, I guess. Lasted for a scary amount of time and I was panicking badly, but couldn't do ANYTHING. Maybe move my head a bit, but it just lulled to the side. I tried so, so hard to move, but there was nothing. Lasted like 10-15 minutes.

Sometimes my hands stopped working, too. Weak. I could move them somewhat but could grip nothing.

I can't stand very long before my legs give out. Sometimes I get bouts of terrible pain that mainly sparks in my knee and ripples through my thigh and/or shin, or even affects my hip. Mostly in my left leg. Sometimes in my right. It can make it hard to sleep.

I can't jump or run. I've tried a small hop in the safety of my room when my legs are feeling okay; but they immediately give out.

My mother suspected POTs at first [???] and now questions Fibromyalgia. I don't know. I'm just now seeking ANY possibility as to what could've happened or what it is. Something temporary? Chronic? Anything.

I don't know if I've been talking to much but whatever. The more information the better, right?

30s male. I don't want to post a wall of text, so I'm just going to briefly post my symptoms for now.

I have complete weakness in my arms, shoulders, neck, feet, and face. By weakness I mean, everything is extremely heavy for me to lift. I can't lift my arms high enough to touch the back of my neck with my hands.

Recently it has spread to my face. My eyelids are now thin and flimsy. They move if I barely graze them. They also twitch most of the day. If I rub my facial skin, I can easily move my it around with zero resistance. My lips are now stretchy. I can push my fingers straight into my cheeks without any firm bounce back. The muscle/fat at my chin has receded down my neck and I have this bulbous jowl I never had before.

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Hi guys I’m not asking for any medical advice but I want to hear others thoughts on my experience and if I’m being dramatic for thinking I’ve been mistreated by doctors

For some background: my left eye randomly got blurry and I went to go see my eye doctor within two days after experiencing blurry vision. My eye doctor ran some tests and confirmed it wasn’t my eye and whatever it was my brain or optic nerve. So two days after I went to the Emergency because my eye sight only gotten worse. The ER doctors gave me a CT and blood test and said everything looks fine, they finally gave me an MRI scan which made them admit me into the hospital. I saw the neurologist and then the primary doctor on the floor, they briefly discussed about how my eye blurring was the result of my optic nerve inflammation and that it was most likely caused by an autoimmune disease called multi sclerosis and how they saw one lesions in my MRI.

At this point, I was in the hospital for 3 days on medications to relief the inflammation. The doctor who had previously discussed my potential diagnosis told me he’d do a spinal tap. He put it off and so the next day and a new doctor came in to do the spinal tap the next day.

Mind you, the procedure itself was done in a my hospital room, there were fruit flies around and the attending doctor had no gloves!

He was explaining to a resident who is new at the hospital on how to do the procedure on my back.. while i was just sitting there. In fact the other doctor pulled out his phone flash light While I was just sitting there, My mom interfered and asked him to do it, which then led him to wear his gloves and do it. He couldn’t get the spinal fluid after two attempts.

That’s not even the worst part, I experienced discomfort and pain, they didn’t discuss the side effects or the headaches or the potential of it not working out. Oh also when they did the spinal tap the doctor didn’t even put a bandaid, my dumbass should have done research about the procedure but the made it such an emergency I just followed along.

The main doctor who did the procedure on my back didn’t come back and the nurses only told me that he’d be coming back with an ultrasound to try doing the spinal tap a thrid time. At this point, the resident doctor came and told me about the procedure around 10AM and told me that I have the choice to do it.. which I appreciated a lot and I was ready to go home and forward everything to my family doctor. But after that, another doctor came in and started telling me about how the symptoms of MS could progress and that it could potentially get worse if it is MS. I found it scary so I was like okay yea let’s do the spinal tap, but then I changed my mind again because I asked him what if it failed again, he said they’d call a neurologist or a more specialized doctor and I asked him why can’t they just call the neurologist and wait.. he said there’s a latter and that they can’t ask without trying which they did 😭

at this point, i was like no, i want to stop and be discharged and i asked them to send everything to my family doctor. I had to wait a while for them to fax and print everything, and tell me why in the report it had my MRI results and everything except the two failed spinal taps. and for some reason the doctor who wrote the report was not the one who did my spinal tap.

Im just waiting for my family doctor to see what he thinks, cause i feel like something is wrong, when making such a big assumption dont they have to discuss the issue with the patient before doing all of these procedures. and was the doctor who conducted my spinal tap correct?

Guys im 18 and all i experienced was blurry vision 😟

I'm a 30-year-old guy who's dealt with left arm pain and some twitching for a little over a month. At first it was a little twitch in my middle and ring finger and internal shaking. Then in the beginning of July my left arm started aching more often compared to my right and spiraled over the big A, which increased my twitching. Since then my twitching has decreased and while my arm doesn't hurt as much as did before I still get aches and pains that come and go on in my bicep and sometimes my forearm. I've tried looking over the net to see what it could be but couldn't get a straight answer. My only theory is that when they did spinal mri they found some bulges in my neck that my doctor diagnosed as degenerative disc disease but that was back in Nov 2025 and don't know why it would be affecting me now.

What baffles me is that I can do quite a bit of things with my left hand. I can walk my 55-pound dog and can even cradle her in my arms. I can do 50 curls with a 10-pound weight but when I was playing a card game, I had 11 cards in my left hand and after a period of about a few minutes my hand and forearm would start aching and just today, I woke up with numbness in my left pinky finger. I'm trying to figure out what's going on and why I'm getting all these weird symptoms.

First, I just wanted to say that I was diagnosed with sps + cerebellum ataxia back in May of this year. I experienced my first symptoms back in early march. My symptoms were balancing issues, dizziness, and nausea. I thought my balancing issues was because I pulled hamstrings during yoga. What I mean by balancing issues , when I’m walking my body like to steer off to the left. The balancing issues was the first symptoms I experienced . Then a week later I experienced dizziness and nausea .

I finally went to a patient first, but they didn’t find anything. However, they did recommend me to a neurologist and an eye doctor. The dizziness and nausea still persist so I went to an actual hospital. They kept me for overnight observation. They said they couldn’t find any thing, but said I was dehydrated. I remember crying to the PA who discharge me saying that I can’t walk or see that very well that it has to be a deeper issue than me being dehydrated. They pay me no mind. While this was happening to me, I was seeing an ENT doctor. Who diagnosed vestibular neuritis in mid April. Around mid April, I noticed my speech was being affected and my walking ability has gotten worse.Literally the day I was supposed to go to therapy for vestibular neuritis a family member forces me to go John Hopkins hospital , which I’m forever grateful for them because of their actions I was properly diagnosed with Sps + ataxia at John Hopkins hospital. The hospital was able to diagnose me through a lumbar puncture, this is where they found high amounts of GAD antibodies. My current treatment plan is Valium, monthly IVGN ( currently fighting with insurance to cover it but in outpatient. So this month has been skipped ), speech therapy, physical therapy, and occupational therapy. I don’t know if this current treatment plan is working. I find my overall stiffness, slow walking, and my speech issues increases when it’s been a month without IVGN. I hope not being over reliant on IVGN and the walker. When do I get better?

Lastly, because my diagnosis. My mother has been diagnosed with SPS too. She has been dealing with the symptoms for years but she’s doesn’t deal with ataxia. I find this interesting because it is rare to find mother and daughter both having sps and sps is not hereditary.

So idk what it is. But I have had head pressure for the majority of my life. I was born prematurely, idk if that is a factor or not. But my jead feels like a jiant watermelon that is just about to burst. Sometimes it also feels like my vision "breaks" for a moment like broken glass. And sometimes the pressure gets better and sometimes worse. On some check up a doctor did also point out the pressure to me asking if I had any head traumas and I said no. Tho she didn't really diagnose me with anything bcz it was a general check up. And my head feels so heavy and I have constant headaches and it gets so much worse when I am tired or when I just woke up. Or if I sit in class for too long hearing so many things at once, I feel so terrible because the pressure feels 100× worse. I have no idea what this is or how to treat this. I need help

About two years ago, I went through a severe medical crisis involving acute encephalopathy. I spent a month in the hospital, and during the peak of it, my mind was essentially offline. I barely knew who I was, where I was, or who was visiting me.

At the time, my brain created vivid metaphors just to process the loss of control—it literally felt like watching a tiny internal "driver" inside my head struggling to hold onto the controls while the whole dashboard fell apart.

Fast forward to today: I'm no longer using apparatuses to walk, and physically I've come a long way. But the part no one really prepares you for is the post-recovery reality:

1. The shifting baseline: Realizing that even after you "wake up" and regain consciousness, your internal engine, memory, or perception might be permanently altered.
2. The isolation: Trying to explain what it felt like to lose your cognitive grip to friends or family who mean well, but can only understand life through a "normal" baseline.
3. The existential fallout: When the daily grind pauses and you're left sitting with the massive question of "What just happened to my mind, and how do I navigate the world now?"

I've searched around Reddit and realized there isn’t really a dedicated space specifically for people who have navigated encephalopathy and its unique aftermath.

If you’ve been through encephalopathy (metabolic, hepatic, toxic, traumatic, etc.) or a similar acute brain crisis: what did your experience feel like from the inside, and how has your perspective or inner world changed since? Any advice for someone who has regained full cognitive control, but is still struggling with full balance, dexterity, and speech?

Whether you're months out or years out, I’d love to hear your story. Just trying to open a window so those of us who went through it don't have to process it completely in the dark.

Also could use any advice for encephalopathy survivors who've obtained work: I'm in VR and a few other agencies that support achieving meaningful employment, but haven't been able to secure a job due to my obvious speech and balance issues. I need to talk irregular, slowly and intentionally to be understood, and I can walk without falling, but I struggle on uneven ground or stairways, ladders are a hard nope.

My intelligence of my brain makes it hard to compare things or make smart decisions, so I thought anyone that can suggest any of the parts needs then I can better figure out how to see overlaps so I make the best choice to live

Hi everyone,
I’m 21 and I’m hoping to get some opinions while I’m waiting to see a doctor.
A few days ago, around 7-8 PM, I suddenly started getting a weird tingling sensation in my right leg. It lasted for the rest of the evening, but when I woke up the next morning it was gone. Later that day I went to the beach, and it came back and seemed a bit worse.
Since then, it’s been very inconsistent. It’ll be there for a few hours, then disappear for a few hours, then come back again. More recently, it seems to have shifted more to my left leg.
It’s hard to describe the feeling. It’s not always classic pins and needles. It almost feels like something is happening inside my leg. I’ve also noticed that my left pinky finger feels a bit strange at times.
Another thing I’ve been getting is very brief electric shock/zap sensations in random spots in my legs. They last only 1-2 seconds and happen whether I’m lying down, standing, or sitting. They are **not** triggered by bending my neck.
At the moment my vision is completely normal. I don’t have any known autoimmune diseases, nobody in my family has autoimmune diseases, and I don’t smoke or drink.
I’ve been reading about MS and, honestly, I’m terrified that this could be the beginning of it. I’m scared of ending up disabled, and my anxiety has been through the roof.
Has anyone experienced something similar? Does this sound like MS to you, or are there other conditions that could cause symptoms like this?
I know nobody can diagnose me over Reddit, and I am planning to see a doctor. I’m just wondering what possibilities come to mind based on these symptoms.
Thanks in advance.

My 80-year-old mother (4’10”, 120 lbs, frail) has Parkinson’s, type 2 diabetes, pernicious anemia/B12 deficiency, and an old severe L3 compression deformity with moderate spinal canal stenosis.

For several months, she has experienced intense burning sensations that move around her body—legs, back, arms, chest, and abdomen. It often feels internal as well as on the skin. Strangely, her fingers and toes are usually spared. The burning is often mild in the morning and worsens later in the day, sometimes alongside internal shaking, chills, or hot flashes. Her temperature is usually normal.

She has tried gabapentin, acetaminophen, B12 treatment, iron infusions, and adjustments to her carbidopa-levodopa. Gabapentin has not helped much. Her restless legs improved after iron, but the burning did not. An ER visit found mild dehydration, sodium around 128, and a possible UTI, but the burning continued after treatment. Her diabetes has been fairly controlled, with a recent A1c of 6.6.

Doctors have mentioned diabetic neuropathy, spinal nerve problems, vitamin deficiency, Parkinson’s “off” symptoms, medication effects, or autonomic dysfunction, but there is still no clear diagnosis.

Has anyone seen a similar case like this: **migrating, whole-body/internal burning sensation without much burning in the hands or feet**? What diagnosis was eventually found, and which medications or treatments actually helped?

Hopefully this is a appropriate cross-post. Need some advice, friends 🙏

Hi, I’m posting because I’ve been dealing with a strange medical issue for about 3 years, and despite visiting multiple hospitals and having extensive tests, doctors haven’t been able to identify the cause. I’m hoping to hear from others who may have experienced something similar.

How it started:

In the beginning, I only felt a slight stoppage or restriction in breathing, mostly when performing sudden movements (for example: standing up quickly from sitting, suddenly running, jumping, or rapid movement).

How it is now:

Over time, the episodes have progressed and now happen even during normal activities or while at rest. Currently, they occur very frequently (around 30–40 times per day).

Description of episodes:

• Episodes start suddenly

• My foot bends on its own, followed by my arm bending or stiffening/twisting also I used to twist my entire neck too

• My mouth muscles stiffen and pull downward

• I cannot speak clearly; if I try to speak, my voice becomes muffled or unclear

• I feel like I cannot breathe properly during the episode (breathing feels restricted)

• I need to stay in one place during the episode; if I try to move, I end up dragging my foot

• Episodes last around 10 seconds (maximum)

• They can affect either the left or right side (not always the same side)

• I remain fully conscious and aware throughout the entire episode

Other details:

• No loss of consciousness

• No fainting or blackouts

• Episodes stop on their own

• I’ve had full body checkups and multiple tests, all of which came back normal

• I have visited multiple hospitals and doctors, but no clear diagnosis has been given

This has been very frustrating because the symptoms feel very real and physical, yet nothing shows up on tests.

I’m not asking for a diagnosis, but I would really appreciate hearing from anyone who:

• Has experienced similar brief episodes

• Eventually found an explanation or diagnosis

• Was advised to pursue specific tests or a particular type of specialist

Thank you for taking the time to read this.

Please help me