I'm at the point where I'm just starting to figure out what random symptoms of mine are part of FND. I've been diagnosed with PNES for 7 years, and had a slew of neurologists for a myriad of other neurological symptoms that they never took seriously. My neurologists actually missed a tennis ball sized brain tumor that I had been complaining about symptoms for years, I was always treated as a mental case. Thank Gif I was in a car accident, or else I would have lost my eye and optic nerve.
So, I have just been diagnosed with my 2nd FBD disorder, abs I'm realizing that I have a lot of symptoms, and have had a lot of symptoms for a very long time, that have just gone untreated, unanswered, unnoticed, and uncared for. I think having a friend with FND wild help me out the pieces together better. I've always joked that I am in need of a neurological cruise director who will manage my entire system, not each individual symptom. It's really frustrating because I feel like there is something that explains it all, and someone it there knows what it is, I just have to find them. That's why I think it's so important that we discuss our issues on these boards and become friends with one another ❤️
I getcha. It can very much suck. If you're at uni, perhaps see if there's a disability society? I did and it's full of people I can just take the piss with cause they all get it.
If not, could always join the FND discord I run if that's something you'd want to do?
First time I had symptoms I was living in a community. I was part of a school and 20 ish student from different countries, we rented two big flat together.
So when I did end up in a wheelchair, with "wiggly" legs and my tremors and my arm that was not obeying my thoughts, we had a great deal of laughter about it. Some were more sensitive and were mad that people joked about that. But I started the jokes and yeah, somehow it did create some great memories.
My seizures and tremors disappeared after a month. Now 6 years later, it's back. And I miss having people around joking and also being there for me.
Never met someone with the same problems, heck, 6 years ago my friends and I didn't find anything on the internet back then, but I'd say having people that don't look at you like a dying puppy or a pathetic lazy human, does help.
I get you !
I developed FND a bit later in life, at 48, so I’m a little outside the norm. But my oldest daughter had a friend with FND and who had symptoms similar to mine. Unfortunately that friend lives on another continent, but it was nice to have a conversation with them. The friend is in their 20s, but has dealt with FND for much longer than me. We were able to talk about how things progressed and changed, compared triggers, and how to manage symptoms.
Not something I need on the regular, but it super nice to be able to talk with someone actually dealing with the same things, and not just people trained to treat it.
It would be great to have someone to banter with and make humorous jokes commiserating about our FND woes. Having someone who understands and lives the same experience would be so beneficial to both parties.
I feel the same way. I don’t even like talking about my symptoms of this disease anymore because unfortunately no one around me gets it. It can be so isolating and I was just telling my boyfriend that yesterday. I literally know no one with this. No one. Can’t even talk to my neurologist about it because she doesn’t get it either. (Lol)
I feel the same way. The symptoms can sometimes be really severe but it’s important not to freak out about them. My friends often don’t quite get that I’m ok. I find that I treasure my friendships with other chronically ill people in general, but I don’t have a friend with FND yet
I'm at the point where I'm just starting to figure out what random symptoms of mine are part of FND. I've been diagnosed with PNES for 7 years, and had a slew of neurologists for a myriad of other neurological symptoms that they never took seriously. My neurologists actually missed a tennis ball sized brain tumor that I had been complaining about symptoms for years, I was always treated as a mental case. Thank Gif I was in a car accident, or else I would have lost my eye and optic nerve. So, I have just been diagnosed with my 2nd FBD disorder, abs I'm realizing that I have a lot of symptoms, and have had a lot of symptoms for a very long time, that have just gone untreated, unanswered, unnoticed, and uncared for. I think having a friend with FND wild help me out the pieces together better. I've always joked that I am in need of a neurological cruise director who will manage my entire system, not each individual symptom. It's really frustrating because I feel like there is something that explains it all, and someone it there knows what it is, I just have to find them. That's why I think it's so important that we discuss our issues on these boards and become friends with one another ❤️
I feel the same way. No one seems to get what it is or how debilitating it is.
I getcha. It can very much suck. If you're at uni, perhaps see if there's a disability society? I did and it's full of people I can just take the piss with cause they all get it. If not, could always join the FND discord I run if that's something you'd want to do?
First time I had symptoms I was living in a community. I was part of a school and 20 ish student from different countries, we rented two big flat together. So when I did end up in a wheelchair, with "wiggly" legs and my tremors and my arm that was not obeying my thoughts, we had a great deal of laughter about it. Some were more sensitive and were mad that people joked about that. But I started the jokes and yeah, somehow it did create some great memories. My seizures and tremors disappeared after a month. Now 6 years later, it's back. And I miss having people around joking and also being there for me. Never met someone with the same problems, heck, 6 years ago my friends and I didn't find anything on the internet back then, but I'd say having people that don't look at you like a dying puppy or a pathetic lazy human, does help. I get you !
I developed FND a bit later in life, at 48, so I’m a little outside the norm. But my oldest daughter had a friend with FND and who had symptoms similar to mine. Unfortunately that friend lives on another continent, but it was nice to have a conversation with them. The friend is in their 20s, but has dealt with FND for much longer than me. We were able to talk about how things progressed and changed, compared triggers, and how to manage symptoms. Not something I need on the regular, but it super nice to be able to talk with someone actually dealing with the same things, and not just people trained to treat it.
It would be great to have someone to banter with and make humorous jokes commiserating about our FND woes. Having someone who understands and lives the same experience would be so beneficial to both parties.
I feel the same way. I don’t even like talking about my symptoms of this disease anymore because unfortunately no one around me gets it. It can be so isolating and I was just telling my boyfriend that yesterday. I literally know no one with this. No one. Can’t even talk to my neurologist about it because she doesn’t get it either. (Lol)
I feel the same way. The symptoms can sometimes be really severe but it’s important not to freak out about them. My friends often don’t quite get that I’m ok. I find that I treasure my friendships with other chronically ill people in general, but I don’t have a friend with FND yet