Summary as to how I got to THIS point... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Summary as to how I got to THIS point & finally a diagnosis

BIGMOMMA923
BIGMOMMA923

I've finally got a definitive diagnosis of Conversion Disorder Functional Movement/Neurological Disorder first part of this year. I've been battling random symptoms & numerous possible diagnosis. Tho I never had a Dr tell me THIS diagnosis, I looked back over my online chart for a hospital stay, & saw that diagnosis on my chart.

THIS is after being accused of faking & tryin to get attention for the better part of the last 20+ years. My children grew up with me in various stages of ability & inability to take care of them. They have@ different times been the ones to take care of each other & me as well.

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Louyse
LouyseFND Hope UK

Hi. Sometimes "they" - the medical world finally there: wherever "there" is. 20+ years of being considered a fake - I'm sure you've had the attention seeking bible of hurt thrown at you. I hope you may now get the respect and dignity and humanity you deserve. But you should never have been made to bear the onus of having it given. There will still be doubters but not among your family here.

Welcome.

Cheers

Lou

Have you gone to a treatment center

Bigmomma923, you are amazing if you have jad to deal with this for 20 years. I can't imagine that long. I am just about to hit my 9 years and one month, and it surely has been a roller coaster, I have been very fortunate though. I have gone from a cold to no voice, to 2 year a later with uncontrollable movements added, then adding gait issues, brain fog, unable to speak, then the docs would say, oh your seizures are just non epileptic until I challenged them. They looked outside the box and found I had BOTH NON and epileptic seizures, however with an amazing therapist, and the right concoction of medications, I have now been 4 months free (knock on wood). It I put up with it all at work for years, finally had to leave on disability, which was a fight to do, even though they would see and hear me struggle. Then it took 3 years to obtain US disability financial help, and now with the right meds etc, am seeing a brighter side of it all. Now, it's not over just yet, but I am gaining back bits of me more and more, which I am so grateful for. I pray that you can find some help. Great big hugs and best wishes

Cgarff

Hidden
Hidden

Just to share I live in the USA in Texas. DFW to be exact. I was diagnosed on an accurate level and had many different doctors say the same thing. That it's mental and that I need to figure it out and no one else could. I see only 1 of 2 people who have any real prctical training or knowledge of this and she's good but she's a human being with a family and a seperate life. I see he once a week for an hour.

I come from a troubled past but have had extensive counseling and therapy and really do think of myself as a survivor of what ive been through and not a stereotype and mental case. But here I am like you even with a diagnosis still waking up everyday wondering when or if itll be over. Best thing I have to say is find and hold onto what gives a higher quality of life. For me Im a mechanic working on vehicles thats my therapy

Hi, 20 years, you are truly a warrior, I’m now entering into my 4th year and if I’m honest it had dragged me down. BUT I now try to think all the time when I have doubts (next year will be better) this year has been the best so far but i wasn’t as improved as much as I’d hoped for and I did get angry and frustrated with myself and pushed myself to hard and has a relapse. I recognise what I’ve done though and will try not to repeat this mistake next year. I’ve also gone down with a rotten cold, no taste, no smell, Christmas dinner looked lovely 😊 I just imagined it tasted great. Over 2 weeks this cold has lingered and is now becoming annoying as it just isn’t budging. It’s lovely to read that your children helped you in between you looking after them, I loved that bit. It’s took 4 years and my daughter is only just coming to terms with FND, it’s ok to read about it but when you live with it and watch a loved one struggling with normal daily behaviour it’s hard to come to terms with but I’m proud to say she is getting there. My partner has always been a godsend 16 years together and has been my rock all along the way of our journey. It’s so sad to read time and time again that we are faking our symptoms but hopefully now awareness is slowly happening this will not dominate professionals attitude towards us. My kindest regards to you and your great family. 🤗

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