Functional Neurological Disorder...
So... I've been given a diagnosis of functional neurological disorder. And with this, I feel like... maybe I should back away from the forum. All of my scans show no demyelination, so good but bad. My hardware is fine but my software is corrupted. Unfortunately this means that I just get to experience this, the only 'treatment' option available is conversation therapy, which I am fundamentally opposed to.
I have such mixed emotions with this...devastion that there's really nothing I can do to make my situation improve. Relief that I have no physical damage visible. Sad that fnd has no community like I've found here. And worried about what's going to happen next.
My neuro symptoms keep getting worse, I'm not going to stop following up with scans and blood work to monitor. But I'm not going to fight the science. It just... sucks. In a way that I didn't imagine.
With fnd, there's usually no medications that affect the symptoms experienced. I don't expect that to change, as long as it remains that the physical cause remains unknown.
So I've decided to embrace what I have, do what I want, and take every bruise, every tremor and every fall along the way. We're going to start hiking again...if I fall, hopefully there's a tree to grab. We're going to have fun, every day. I'm going to dance every day.
But I wanted to share because this has been such a wonderful and supportive community, and several folks have responded to my posts over the last two years. I don't want to diminish anyone in the community with where I ended up. I'll remain hopeful that new developments will happen, and maybe we'll find something to help. So much love and respect to you all 💜💜
Hey,
!
I have mixed emotions about this as well. You have become such an active and nurturing part of this community and I will really, really miss your comments and posts. You have really made a difference here. I hope your condition continues to be researched and that treatment options are discovered in the next few years.
I am so sorry. I know it must be weird to go from one diagnosis that, while devastating, has a large community and many, many treatment options to . . . the unknown. That well and truly sucks.
I hope you get to dance every day that you want to. That you go on many hikes (and don't fall!) this year. And that your symptoms level off and maybe even improve!
Thank you for being you and for sharing your warmth, empathy, compassion, and openness with this community. You will be missed. And don't hesitate to check back in once in awhile, if the urge ever strikes 😉 .
Best, Erin, Team Member.thank you for that! You will still be my people, I'll check in. But I will take care to not step beyond my experience. Because it really matters to me that everyone searching for diagnosis or who has diagnosis receives the respect they deserve.
I'll not lie, it's been an emotional and trying month... coming to terms with the fact that this is just what it is for the present. Knowing that my current options are so limited is a bit deflating. And learning more about FND, like the fact that most medications don't actually help with the symptoms when they're caused by FND. Like baclofen and gabapentin won't affect what I'm experiencing.
But I am me. I am hopeful, optimistic, and never back down. So I'll be fine. If I fall...then I fall. But I've got my people in my immediate life that step in and help me out when I need it.
I am so deeply appreciative of this community for everything. 💜 And I'm not breaking up with you guys, just stepping back to give the respect you all deserve. Don't worry, I'll still chime in with advice for situations I've navigated, or compassion when someone needs it.
Giving much love and all respect 💜💜
Please don't leave🙏🏻
I'm not leaving 💜 I'm just staying in my lane. I'll still watch the forum and chime in when appropriate. It's just... I don't feel like it's respectful to use the MS community to talk about my neurological symptoms and troubles now that I know I don't have MS. FND is a different ballgame. You still have my support and my compassion. 💜
