He looked me in the face, and with the utmost compassion said, "At least it isn't something serious like MS.". 14 months, and that's the best he can say? I begin CBT for 12 months at the end of May. If I still have problems in a year I can request a reevaluation. He flat out stated they can't help me.
I refuse to hide this anymore. I refuse to feel like less simply because I am unexplainable.
Together we will make the world #FNDaware!
What a horrible comment. At least there are 12 different drugs to treat MS. We have nothing!
Well done! Great video. Did you share in the Facebook groups?
I did, yes. I have posted this in several places, including giving FNDHope permission to use it for World FND week and sent it to several You-Tube content creators that I have personal ties with, in the hope that they share it as well. I have also been largely mum about my condition... but I tagged all of my family on Facebook to make sure nobody misses seeing this. I won't pretend this isn't taking over my life anymore. I refuse to accept that simply to make other people more comfortable with their reality. Reality is an ugly place for a lot of people.
I agree! Yet when I once said so on this forum, I was severely berated by ... some members/suferrers.
Some of us have a very hard time accepting the reality of our situation. Some find it terrifying and "settling" while others, like me, find it comforting to know where the sidewalk ends. That doesn't mean we don't both still see hope, but we see it in different ways.
Thank you.
I am very sorry yet another person has had the misfortune to meet a crap doctor.
It is so infuriating - people with fnd are meant to have a worse quality of life with the same symptoms as other neurological diseases, are they not?
Oh to have something people, especially those that are meant to be there to care and cure, bloody believed. Where there is help and compassion.
Shame on him.
The thing is, he was one of the kindest. They don't mean to come across the way they do, and the only way to change that, is to learn more about FND, and teach the world so that we can learn to understand it together.
Well done for your calmness and consideration. And also for ‘coming out’ and being open and honest. Very brave imho.
Yes I admire you for 'coming out' - (isn't it awful that we have to feel like that when already so debilitated). I still haven't really done so. I think I am waiting for my neurophysio assessment first as I really need some help figuring out if my leg issues are FND or something else. But I totally get what you are saying about sparing others at the expense of ourselves. It so wouldn't be like this with any other illness!
I thought your vid was really clear and well put together and definitely something I would share when ready.
It also strikes me that (possibly) what you experienced is what Prof Edwards was saying absolutely needs to change in his last webinar (‘at least it isn’t serious/we can’t help you’)? Are you in the UK Gud4Ewe?
This is Such a powerful video, thanks for mailing it and sharing. I too had a difficult diagnosis where the FND ‘specialist’ told me that once I’d accepted my condition that would be my cure. It’s very hard to fight these kinds of opinions but we are raising our voices together and that’s powerful. Hoping today is a good one for you x
I will not accept this diagnosis for my son! The doctors need to do their job and find the real cause of his illness! Instead of saying “I don’t know but I will work on it til I have an answer.” Many doctors will say “ you have FND or you have depression.” They are easy answers to very hard questions!
Have you had your total antibodies checked by the Mayo test. Any doctor can draw the blood and send it to the Mayo clinic lab to check for antibodies. I think they are up to about 25 antibodies they can check at this point (with new ones found every year) and they can tell you and point the direction of either a neurological disease you have or a cancer that is causing the symptoms. There are also many other things to consider, it could be a teratoma. Have your ovaries been checked for tumors or cysts? In men is the testes that usually have the tumor but could be other places on both males and females. It could also be a paraneoplastic or neurosarcoidosis. There are many things besides the most obvious that could be causing this but the first thing you need to do is have the Mayo Clinic test that checks for the different antibodies in your blood. So many doctors are not aware that this test is even available to the public.
Another test that should always be done is your thyroid, checking for antibodies against your thyroid. It’s a different test than the one that Mayo does, any doctor can run these thyroid tests and should be run along with TSH and the regular thyroid panel. The thyroid antibodies are TPO and TG. If all these tests have not been done, please do not accept the FND diagnosis!
Also...Please get a family member or friend to be your patient advocate! This is extremely important! When you are so sick, it’s hard to hear everything the doctor saying and to remember it. It’s also very helpful to have another person that can make phone calls for you and help you make decisions when you’re having these kind of problems. But it Hass to be someone that really cares what happens to you and will fight with you!
3girlsmama, if you haven’t already, watch the latest webinar with Prof Edwards where he talks about and disabuses the idea of people ‘suddenly’ getting better once they ‘accept’ their dx. Maybe clip it and show it to your neuro/dr?
facebook.com/FNDHOPE/videos... for any who have a hard time finding that one. The topic around this really starts around 9 1/2 minutes or so.
Thanks artmom, I watched it on Thursday and was very comforted by it. I’m thankful because of my nursing background I’ve been able do a lot of research and have been following Jon Stone and Prof Edwards for a little while and have read lots of the medical journals and things they and their colleagues have written. They have confirmed what I had suspected about my condition being triggered by a physical illness (hospitalisation with chronic lung condition and accuracy infection causing me to lose mobility over the course of a week) but it’s not yet filtering down even to some of the specialist centres since they and the condition seem to be entrenched in a psychiatric background. I am going to challenge my assessment (the dr seemed to believe it was triggered by a traumatic c-section 9 years even though I had no history of this affecting me psychologically) but I know I need to tread some-what carefully to get the best result from them. Will definitely be saving the talk and quoting it though if need be! Thanks for you reply, take care x
You are very brave to make this video, Well Done!-I watched this and hopefully loads of others will too. I am just like you and have FND, have been breifly comenting on this site for 6 years. Watching you, you are just like me, I have same symptoms. I have a very good doctor, and have been diagnosed but because so little is known about FND the doctors treat it but have little faith,and don;t give it the importance as MS etc, but one day they will. I have a lot of medication which keeps me on the borders, but still I can get any of the symptoms all of a sudden. STRESS IS A BIG FACTOR IN FND, OR DIFFICULT CHILDHOOD OR BACK GROUNDS, But most of all I just really want to give you a big hug, We are all in the same boat, but I admire you for trying to make people more FNDaware. WITH LOVE XXXX
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