Sick of doctors not knowing what conversion disorder is :(

[Flower9867]

So Saturday I had a siezure one after another 911 was called in and there were two fire trucks and a ambulance. I new what was going on I just couldn't talk or control my body my neck stiff as a board eyes fluttering back well the meg that came said to my boyfriend this is not a siezure. All the rescue team of seven never had heard of this disorder. So I go to the er they look at my blood work my EEG I had done two weeks ago and it came out fine. The er doctor came in and said there was nothing they could do and call my primary and sent me home. We need to get this out to the world it makes us feel like we are going crazy what does anyone have to say about this ?

[VivienneWaterworth]

I'm sorry, but this is just a 'normal day' with CD. Nothing shows up on EEGs or blood work, EMT's rarely know anything about what it is or what to do for you, and ERs send you home, often without doing anything. Unfortunately, that is about the limit of what any of them can do for you anyway. Some people have little tricks they learn that help them come around, but these are usually personalised to the person involved.

Some of these are listed on the fndhope.org website, but you will have to either experiment with these yourself, or get someone who is often with you (e.g. boyfriend) to experiment to find out which, if any, will work for you.

Once you have figured out the best way to treat you, you need to get it written up, signed off by your doctor whether he understands it or not, then carry it with you in an easily accessible place so that if it happens again and your boyfriend isn't with you, the EMTs can carry out your instructions. Going to the ER is usually only required if you have hurt yourself when you fell, or if you are struggling to breathe. Otherwise you are probably safer to stay at home or at work, where you can recover quietly in your own time without the stress, flickering lights, and the noise and bustle of the ER making you worse.

All the best in your search for answers. Joining a support group, e.g. on Facebook, can help both you and your boyfriend cope with the changes that are happening to you, and also help you with info about this dratted disorder.

[EnglishIslander FND Hope Volunteer]

And as an addition to Vivienne's reply, you can join a (private) Fb Support Group page by clicking the link on the Fndhope website Home page where you will find many hundreds of other sufferers able to support and assist you.

[boazk]

i am sorry this is happening to you. i have had conversion disorder for 2 1/2 years now. i started out with seizures and i remember getting all of those negative tests back like it was yesterday. it is really hard when no one really understands what is wrong, but it is really hard when no one knows how to help you.

i just found this site and the FND hope website this week. i am going to do everything i can to get the word out about this organization in my community. i would hope you try and do the same. since not many people know about this disorder, i think its up to those who are being affected by it to spread the word. Also, im looking to start a fundraiser at my school to raise money for FND research.

i really hope your situation gets better soon. Stay positive and find people who will support you no matter what. i will gladly be here if you ever need to talk to someone who understands your disorder first hand.