Diagnosed with FND Yesterday

[NoahVampire]

Hello,I was diagnosed with "conversion disorder" (which I learned is now called FND) yesterday after visiting the ER. I had never heard of it before.

I have had tics for 3 years, recurring "episodes" of being confused and unable to talk or move for 2 years, and seizures for 6 months. These symptoms frequently become debilitating and cause me to frequently have to call out sick to work, to miss out on events and plans, as well as general trouble completing daily tasks.

I have been confused for so long because all of my test results come back normal - multiple MRIs, CT scans, an EEG, blood work. The only abnormal things that have been found were in my EEG my brain waves in the left temporal region were slow and high liver enzyme levels (ALT over 1,000 at one point) which turns out are most likely unrelated to these symptoms.

After years of being told by medical professionals that these symptoms were apart of my Schizoaffective Disorder, or even that I am "faking it", it turns out I have FND. I am so thankful to have a diagnosis and to have a clue as to what is happening to me. I am hoping to find more answers and coping mechanisms and am wondering if anyone has advice on where to look for resources as someone who is newly diagnosed. Thank you.

- Noah (he/him)

[kev60]

Hi and welcome, here in the UK its sometimes a battle to be seen and then nothing, a good place to start is here on this site as you will get a lot of answers also look at FND Hope web page also neurosymptoms.org. my FND took 2 years to get a diagnosis but then I was discharged, I had to learn to walk again and after neurophysio I am back to 60-70% normal but will never be 100%. also suffer with talking and memory, I have just started a CBT course which took another 2 year wait. I think you have to find your own way round FND and find what works for you as everyone is different , I thought I was bad until I met other FND sufferers who were worst off. hope you find what your looking for, good luck. kevin

[NoahVampire in reply to kev60]

Thank you so much Kevin. I am actually in the US and it seems the resources here are slim. I'm trying to be seen by a neurologist but I'm going to have to travel 2.5 hours to be seen because no neurologist near me is taking new patients. Also because of my seizures I can't drive so that makes it difficult. I have never heard of neurosymptoms.org so I will definitely check that out, thank you! And thank you for sharing your story, I appreciate it. I had never even heard of FND until being diagnosed so I am hoping to connect with other people who have it and learn more.

[kev60 in reply to NoahVampire]

glad I was of some help, I was diagnosed at the end of 2019 but it started with suspected stroke in 2018, things are a bit slow over here everything takes time. As far as I can tell there are over 200+ symptoms. I just found out I have a new one "tremors" the hospital ruled out parkinsons. I have got used to people looking at me because when I walk I look like I am drunk and my wife is my carer now so I do not walk into the road etc, you will get to hear the hardware is working its a software problem basically the brain sends the signals on different paths than before. even though the neurologists tell me its not in my head, its real. it is in your head as its the brain not firing properly. still getting used to the memory loss (I lost a whole year). sounds like i am babbling sorry just to say it takes a while to get your head around and you just need to try anything and see what works. good luck. kevin

[NoahVampire in reply to kev60]

I had no idea there were so many symptoms, that's interesting. Since you mentioned how many symptoms there are and I know psychological issues are a big part in fnd, I wonder if you or anyone else knows if hallucinations and delusions can be apart of fnd? I've had Schizoaffective Disorder for the past 3 years and I wonder if it could be related or a separate issue.I also have issues with walking / moving and with speech and I've wondered if a service dog is a possibility? Or how to go about getting a service dog since I am poor.

And no worries about 'babbling', I am grateful for anything you are willing to share. Thank you.

[Lady4]

I posted a link to a resource I found for my teenage from fndhope.orgI also found the graphic novel "not there" really good:

neurosymptoms.org/en/media/...

They really explain things simply.

My son isn't suffering with the seizures currently more headaches and has been offered "talking therapy" referred via Neurologist seen today, think became shut off from the real world.

I hope you find your way its a maze but lots of info on the sites. The diagnosis totally flawed me last year, so breathe and don't spend too much time researching in one day as it can become overwhelming. The novel is a quick read, the other took me about 2.5 hrs but I did spend time on the links to other resources.