u/linku_h

I only recently became disabled. I use crutches for short distance walking and wheelchair for long distance.
I spend 99% of my time alone when I go out and I usually don’t talk to people. I enjoy blending into the background, ever since this happened to me… I can’t really avoid interaction. Everytime I go out somebody asks. Or people stare at me. Or I need help with something inaccessible.

I ALWAYS get questions anytime I’m in an uber. I really hate talking about it. I hate it so much and I know I can say no. But I don’t even like the question. I wish nobody would ask and I wish people wouldn’t gawk at me. I wish I didn’t need a ramp or extra help with everything I fucking hate it .

I know my life will never be the same, but I don’t want every single interaction and every part of my life to be defined by this unfortunate thing that happened to me :(
Does this happen ro anyone else? The stares and questions? I wanna know everybody’s stories lol.. I feel like knowing it’s not just me will make me feel better

So I’m pretty sure I have fnd, developed very recently. I was referred to a neurologist and am wondering if it’d be smart to bring up FND to the neurologist when I meet him. I know a lot of doctors don’t like when you bring up disorders and tell them what you think you have. But I’m like 99.99999% sure I have it and so is my family.
I want to tell him so that it isn’t just ruled off as anxiety. But idk

I was at the ER today because I was spasming uncontrollably and unable to control my legs to walk or move my arms properly. I was given ecg blood test head ct xray and they found nothing. I was still unable to walk. Instead of further investigation and referrals, the doctors assumed I was being hysterical. They kept insisting it was stress. I told them I’ve been like this for the past 2 days. I need treatment, they cant just say it’s stress and send me home when I can’t walk or breathe properly with NO referrals to specialists or plans. For some reason they were extremely reluctant to refer me to outpatient clinics to treat my issues.

So while I was in hospital, I needed to use the toilet. I asked them for a wheelchair so I could go to the bathroom. They said I can walk. I stood up and told them I can’t. 2 doctors got up and said that I can because im standing. I told them I literally cannot walk. I can balance on my legs for a few minutes, but I can’t walk without being in extreme pain and exhaustion. They kept accusing me of lying, they said it’s impossible for me to not be able to walk when I can stand. They both kept forcing me to walk when I was in such severe pain. They both stared at me while I cried and struggled. It was so horrible. I genuinely couldn’t stop crying. I was begging them to help me. At some point I was standing for too long and I started to fall over. The doctor just stared at me stumble all over myself. I sat on the ground and started sobbing and she walked away.

I dragged myself to the toilet after crying for 20 minutes in the hallway while th doctors sat there at their computers. I was just so so sad. I couldn’t handle it anymore… I went back to my room after using the toilet and cried. A social worker came and started asking me about my home life. I told her to leave me alone, she asked me what I wanted and I told her I want a referral to specialists that can help me. She said they can do that. I also told her I don’t want to talk to the main doctor that forced me to walk. She said that’s fine and left.

The doctor I specifically did not want to see walked in 20 minutes later,made me cry again and refused to give any referrals. insisted it was stress that was causing my issues. I got discharged and left.

I’m still crying while thinking about this. It was genuinely so traumatising and painful. I’m so sad I’m just so fuvking sad I wish this never happened to me I wish I could walk I wish people were nicer to me

I’m 21F I take Sertraline 100mg I’m 5’5 and around 55-60 kg (haven’t weighed myself in a while)

Brief rundown of everything then a more detailed overview below:
- extreme chest pain, thought it was a heart attack
- pain spread to back, shoulders and neck. Fingers and legs were hurting too
- ER found nothing. Sent home with ibuprofen
- 2 days later went back for chest pain and nausea Unable ro walk properly. Suddenly unable to move hands in waiting room.
- inability to move muscles spread quickly to my entire body. Struggled to speak. Uncontrollable shaking.
- Given Valium and shaking calms down, still unable to move properly
- blood test and ecg came back fine. They sent me home
- went to another ER within same hour. Sent to neurology. Neurologist said it seems like nothing urgent.
- just got head CT. Uncontrollable shaking started again.

Some other stuff;
- I can move my fingers properly, but not my hand. My hand freezes when I try to use it too much
- When I try to walk I feel like my organs are contracting. It feels like an extreme pressure on my stomach. Walking takes a lot of energy out of my stomach specifically.
- moving my hands take extreme pressure from my shoulders and biceps.

Actual story:
On Thursday I had sudden extreme chest pains, spread to my back and shoulders. I thought I was having a heart attack . I went to ER and they did ecg xray and blood test. Found nothing and sent me home with ibuprofen . Said it was costochondritis

Saturday I still had chest pains and was having trouble walking, tingling in my fingers and stuff. Also feeling nauseous. Went to ER. As soon as I sat down my hand stopped moving properly. It’s not like I was paralysed, it was more like my muscles would freeze. I can flop my arm around but I can’t actually use my arm. It spread to my right arm. Then right leg. Then my jaw. My whole right side was uncontrollably shaking and I had to hold my jaw to talk. Then it spread to the rest of my body and I was just shaking and my muscles felt like they were frozen. They gave me Valium bc I was shaking too much to do ecg. It really helped and I was no longer shaking, but still my muscles were semi frozen.

The doctor came and told me nothing was wrong. He told me it was anxiety (IT WAS NOT ANXIETY) he tried to convince me that I have an anxiety disorder and kept asking if I had ever been to a psych ward. I have depression because it runs in my family. My depression is controlled now under the meds and psychologist.

I asked for any other tests (like CT or something idk) and he said NO because I’m too young and it’s a risk to my fertility ? I asked for another doctor. Other doctor basicallly said the same thing. That I’m actually fine and it’s all anxiety. All the shaking and muscle freezing will go away when I calm down. I was calm 90% of the time I was in the hospital (because I assumed they would cure whatever was going on).
I told the doctor it was something else… he laughed at me and implied I was hysterical and stupid. I left and went to another hospital.

Other hospital took me to neurology immediately. Neurology just assessed me (I’m in my hospital bed right now). Neurologist came back and said that I seem fine from an emergency standpoint. That she can’t see anything that’s life threatening or whatever. She said she might refer me to physio. Then she got me a head CT (I just came back, results aren’t back yet) they said if the head ct is fine then they’ll discharge me and try something outpatient.

WHAT THE FK IS WRONG WITH ME????? I assumed the neurologist would be able to find out. EVERYONE HAS NO IFEA WHY IM LIKE THIs!!! I THOUGHT THAT BY THE TIME I CAME HOME THEY WOULDVE FOUND IUT WHAT IT WAS AND CURED ME BUT IM STILL LIKE THIS AND THEYRE SAYING THEYRE GONNA SEND ME HOME EXACTLY THE SAME!!!!

Where do I go if the head CT is fine???? I was able bodied and completely normal before all this. I’m genuinely so fucking scared I can’t even move. I need a wheelchair at all times and I can’t even push the wheels myself cause my arms keep locking up. I’m genuinely begging for help right now :(((

Which one should I get? I don’t wanna get both cause of radiation levels… I was diagnosed with costochondritis at the ER a few days ago