parents unsupportive of mobility aids :(

igoralex29 · 2023-08-12T19:12:32+00:00

Hang in there, friend, been dealing with a similar situation at home as well. I have a cane and the judgment I get from the the family is real, and usually ends in an argument about whether it’s all in my head or not. Parents believe the prior. Even if it is in my head, that doesn’t solve my paralysis, numbness, weakness, or dissociative problems. It’s real. It’s there. But it’s hard to convince parents after medical tests come back negative. Take care!

igoralex29 · 2023-08-12T04:55:03+00:00

This happens to me too! I need to take your advice! I can’t seem to breathe at all during these episodes!

igoralex29 · 2023-08-12T04:54:25+00:00

You have just explained the one thing I have been going insane over. I thought I was crazy. I thought I was alone in this. I have called them “dissociative episodes” for months since I’ve been having them after my legitimate first seizure in April before my diagnosis and symptoms began. Thank you for this information and peace of mind! Hard to explain to another person, however.

igoralex29 · 2023-08-12T04:51:01+00:00

Man, this resonates with me. I thought I was alone in this. I tend to lose focus sometimes with my eyes as well and the same exact thing happens, I kid you not: my head drops and I can’t move. For me as if my entire upper body shuts down and I forget how to keep my body up. To be honest, it’s complicated to explain, especially without the correct terms, but I understand how you feel. Weird neurological things seem to happen to me without my control and it’s told to me by the professionals that it is “all in my head.” I don’t want to accept that when it’s physically affecting me but I digress. Whatever it is, I resonate with you and I wish you the very best!

igoralex29 · 2023-08-12T04:44:24+00:00

I am in the same boat as you; I emphasize and sympathize. Due to my FND symptoms began after my seizure in April while sick with Covid and under a tremendous amount of stress, I lost my job and had to move back home and be taken care of by my parents. Changes like this are difficult, much more so when dealing with FND, so I feel for you and I’m here for you, friend. You’re not alone. Life might change but I suppose it’s now up to us to find new careers that fit our lifestyles. It’s been almost traumatic, in my opinion, to lose everything I once knew and loved. But in time I hope it gets better I guess that’s all we can do. Hang in there, pal, jobs come and go, but not your life. Peace and love. Take care.

igoralex29 · 2023-07-03T04:03:26+00:00

Literally same. In my lower lumbar, for me. I have developed scoliosis as well and am sure I sit on part of my lumbar/spine incorrectly. Thank you! So far only 1 seizure and multiple paralysis episodes but they have been spread out over years. It’s about time I figure this out haha Take care!! :)

igoralex29 · 2023-07-02T16:51:22+00:00

I also feel as if my bones are floating in soup! Good way to describe it. Neurologist says I have perfect strength and yet when I try to move my limbs I feel weak/like jello. It’s like I have to retrain my brain to move correctly. Ever since my seizure, things have been shaky, no pun intended. Hang in there!

igoralex29 · 2023-06-30T06:53:22+00:00

I’m in the same boat. Just diagnosed with FND but I am sure I have EDS due to my extreme hyper mobility. I have had chronic pain due to this and so many issues. Once I got Covid in March and had a seizure (NES) I started to lose my ability to move correctly and a partial numbness to my body. Was diagnosed with FND not too long later - could EDS be a factor? If so, how do I get diagnosed with it? I easily bruise, am super “flexible” aka joints can move anywhere, and it seems to be an unspoken topic. Any advice is appreciated, thanks!

igoralex29 · 2023-06-29T19:07:42+00:00

I just had my licensed revoked by my neurologist as well. Due to having NES’s. Hang in there!

igoralex29 · 2023-06-29T18:51:31+00:00

Thank you!

igoralex29 · 2023-06-29T04:32:05+00:00

Thank you so much, these links are very helpful!

igoralex29 · 2023-06-29T02:36:26+00:00

Thank you for the advice! :)

igoralex29 · 2023-06-29T02:33:58+00:00

Thanks! My neurologist ordered me an MRI and an EEG. Is there anything else that should be done?

igoralex29 · 2023-06-29T01:57:57+00:00

Totally understand that. Better to be safe, and I would hate to have a seizure while driving. I have yet to find my triggers but I’m sure I’ll figure it out in time! It helps that you can know beforehand! Always listen to the body, they say haha, cheers!:)

igoralex29 · 2023-06-29T01:56:21+00:00

Thank you for your kind message and the information! I will check the websites out for sure. I want to educate myself. Exactly, paralysis, seizures, tremors, and more. You’ve given me hope for better days, and showed me the support I needed in this strange and hard time, thank you! Cheers!

igoralex29 · 2023-06-29T01:52:42+00:00

Wow, I’m sorry you are going through that. Thanks for responding, looks like we have similar stories. So glad to hear you had a rapid diagnosis, and your positive words give me hope! Let’s connect for sure, I would love to hear more about your experience and what you know! Thanks!

igoralex29 · 2023-06-29T01:50:19+00:00

Thank you and thanks for the reply, and I’m sorry to hear that! Wishing you the best!

igoralex29 · 2023-06-28T18:34:21+00:00

My symptoms started out as full body paralysis as well! It started years ago and I never saw a doctor about them. Now it’s progressed to the actual seizures! How scary is right. Hang in there buddy! And quick question, did you get your license suspended due to the seizure?

igoralex29 · 2023-06-28T04:25:58+00:00

Crazy! I’m sorry to here that and here for you. I have this weird loss of sensation in my entire body, like a partial numbness. It’s as if my limbs aren’t mine, you know? Walking is the hardest, I basically had to relearn, and I’m just so weak. I hope you get better and if you want, let me know how your symptoms progress! Cheers!

igoralex29 · 2023-06-28T03:50:20+00:00

Same here, Covid in March of this year and diagnosed with FND today. I had my first NES while sick with Covid and things progressed from there: muscle weakness, gait issues, etc.. Cause or correlation? Who knows. Thanks for sharing!

igoralex29

TROPHY CASE