Hello, I'm 26 and suffer from FND.. It was mentioned a few years ago in hospital and then forgotten about. 2 months ago I had my worst turn that lasted 4 weeks I couldn't talk properly, walk or move my arms.. I still have these problems now just not 24.7 just comes and goes as it pleases.. The doctors won't send me to a neurologist as they think it will just go away. just throw more tablets at me that turn me into a zombie.. I have 2 children and a job I feel so useless and scared... just want answers so I can come to terms with the situation and so people can understand its not in my head.. just want to feel normal again 😔 had enough of not knowing what each day is going to bring pain or twitches maybe even numbness or not being able to move body parts.
Had enough.. need to know I'm not the... - Functional Neurol...
Had enough.. need to know I'm not the only one.
How frightening for you.. I am so sorry,
Love, Mary B
Thank you x
Thinking of you, it's incredibly hard.My daughter is 16 and it took 9 months to see a neurologist , the GP had referred but wait list so long, it took constant persistence and a couple of visits to a&e before by chance a doctor in assessment unit took time to talk to me and see the devasting effects it was having not only on my daughter but the whole family, he knew the neurologist and managed to get us an appointment.Keep fighting , challenge your doctor, go to another doctor , go to a&e , it's so hard and you have to dig deep and get 'those looks' but it is worth it to see a specialist.
I'll be honest , it's not changed my daughters life hugely getting diagonosed however at least it's ruled out other conditions, she's starting neurophysio soon and continues to have Cbt from Camhs.for her school have been more understanding , and at the moment she can only attend 2 lessons a week and they send work home for her.when she 'only had anxiety' and kept collapsing at school they weren't as helpful.
Keep talking, don't bottle it up, there's Fnd Facebook page that's great to talk and listen to others.And it's given me other ideas, tips to try to try and ease her symptoms.
Take care, be kind to yourself and keep talking xx
Oh bless her.. she is lucky you have a mother who is so caring and helpful...
I was diagnosed 4years ago and offered no help.. had ambulances out been to a ne and also our of hours doctors.. I have no fight left. . you are right it cause so much strain on the family of feel so bad on my partner and two tounge children. . thank you for your message and I hope your daughter finds something that works... when my mother was alive she was always trying to help me find solutions to help too... good luck x
So sorry about the spelling.. had no sleep.. out of hours * younge children *
Hi my life was turned upside down on 12 th August with horrible seizures three to four times a day. Still can't watch tv , listen to music or even go into a shop. I am living with my parents at the age of 47. It's a crazy condition with no clear cut answers. I'm paying to see a neurologist in December as hope to get some explanation , sending you a big hug x
Sorry to hear that.. it over takes your life and makes you feel unless. but your not. I don't have seizures just unable to walk or talk... having the shakes memory loss ect... just come back to work after being off for 4 weeks and finding it very hard walking.. I'm going to go privately too. hope they help you my love xx
I've been off work for 13 weeks now , feel so lonely and depressed , good to have somewhere to chat with someone who knows what a living hell this is. Thank you x
This is very true feels like no one understands..so nice to know your not imagining it. oh no do you think you will be able to go back to work? x
I hope one day I will but don't think this year. I can't even talk on the phone and speech is really affected and end up in tears
Oh gosh. I'm so sorry
Hi Allsaw, Have you had your speech checked with a dystonia voice specialist, who specialized in spasmodic dysphonic/dystonia. I could not talk for years on the phone broken speech, whisper speech, I was diagnosed with vocal dystonia, my vocal chords pull apart when talking. But you can still sing and cough, and laugh good. They affect another part of the vocal chords. Just a thought, there are things they can do for this.
Hi I have an appointment with a private neurologist in December as been told another 10 weeks at least for NHS. I struggle with words face to face conversations and more so on the phone then I end up in tears due to frustration and feeling stupid. Hoping December will help me to come to terms with what is happening to me and some long awaited answers. Thanks for your input. X
Will be praying for Good Attentive Wise Dr. Stay strong.....
Thank you . The last two weeks have been awful , Sunday I went into total meltdown just couldn't cope anymore.
Been there and done that. I think most of us have, sometimes you just have to vent and let it all out. I just want to scream sometimes just to release but have not been able to scream for almost 18 years now, I am very quiet most of the time with this crazy voice, but that is good too.. So sometimes I just cry to let it out. I think its good for us, helps us get our head cleared and ready to go on again. Always remember, you are not alone.... I try to remember the things I can do and not what I can't. And if even that does not work, I think of those who are worse off, that usually does the trick for me.
Like you, no work,drive or life except pain. 2 years now. Partner work to have roof over head, family still not understanding my illness and not coping with it. Sorry struggling to think now. Lisa
Bless your heart, you are certainly Not the only one. This whole thing sucks, I completely understand where your coming from. I was finally diagnosed around 6 or 7 years ago, but have had it almost 8 now that I know of. It is horrible to go through, and my heart goes out to you. My body has had enough of this crap, and hi know that I for one as I am sure everyone else does want our old body and mind back. So tired, hurt and done!! But we need to keep up with the good attitude, and keep going the best we can. Till we find answers. My suggestion, find a neurologist and tell your doc you need a referral. Doesn't matter what they think, it matters what you need. Also don't stop till you find a good one. I have gone through several. Also get a good therapist to work out any problems, or even just to unload on. It does help. Some rehab therapy and speech therapy help too. Best of luck and don't quit. Keep trying and just remember it could be worse.
Thank you. Yes I intend to keep searching for someone who will help me not the doctors that like to palm me off with more painkillers ect... I have written a whole list of everything that I get and intend to give to my doctor on Monday and tell her enough is enough I can't take anymore. . hopefully she will realize it won't just go away. I'm glad you have found a good neurologist hopefully I will too. thank you and good luck x
Good. Spell it all out. Maybe a good thing to have as well would be a article from a neurologist that was just published last spring. Look up functionalmovementdisorder.com. in the search bar look up Maurer. This article says it may not be all in your head, but in the temporopariatal junction in the brain. On this page is a link to Dr. Maurers article. She is a neurologist at NIH or the National Institute of Health in Bethesda Maryland in the US. Take that with you as proof your not faking it! Good luck
Cheryl
Thank you very much x
Hi
Your post has really touched me. I feel for you I really do. Like you I have young children and it is so tough dealing with this on top of everything. I'm so sorry to hear about your mother. My mum has been the one person who has helped me through this and too tried to help me find answers. I sincerely hope you find a gp that will listen to you and refer you believe me I have been there and know what a fight it is to be taken seriously but please don't give up.
If you ever want to chat feel free to message me anytime.
Best wishes to you
Louise x
Thank you very much.. I'm trying to to give up.. only so many times you can be knocked back... fingers crossed I find a gp that realise how serious and life destroying this is . .. xx
Hi,
Having FND does suck, I've been diagnosed with it as well but there is help & support out there, it can get better with the right treatment!
You definitely need to say to your doctor that you want to be referred to a neurologist because FND is a non- organic disorder, no tablets are going to help or make it magically go away. It's all about trying to retrain your brain.
I'm under Queens Square Hospital in London which is meant to be one of the best neurological hospitals & am going into a month programme in January there. It has a high success rate in helping people learn to cope with their condition by the use of intensive CBT and physio.
I'd tell your doctor to be referred to Dr Gary Price (UCLH or Queens Square Hospital) or one of his team as he is a leading specialist in FND and he is so understanding about everything! Or at least be asked to be referred to someone for some CBT training.
It has taken me two years to get to the stage I'm at now though but the team at Queens are really supportive.
Keep going, you can do this! Xx
I've had CBT. it didn't help unfortunately and I need to change doctors as the doctor today was disgraceful. she asked me what I wanted her to do? and what did I think going to the doctors was going to help with.. then told me if she was to think of anything that could help she will let me know. 💔.. the pain killers help when I have chronic pain but not for everything else.. hope you keep getting better thanks for your message. x
Hi there,I have had fnd for about three years now,I am the same,but they keep throwing tablets at me for the symptoms,no good when I have kids to take care off. x
I'm sorry. I know it is ridiculous sometimes they help but they don't get rid of the situation. doctors are not very intrested as they can't see it. I very hard when you have kids especially when they are younge as they don't understand that you can just become ill all of a sudden . hope you feel better soon x
I've had to change doctors because my regular gp has ignored every symptom I've had over the last 2 years. Now I've changed and requested to see specialists I've finally been helped. I saw my old gp yesterday as the new one is booked out in advance... I told him what the nureo said and he just said 'oh' in response and nothing else.
I really believe you have to fight for your health because some doctors aren't apathetic or knowledgeable with FND. It would be great if more practitioners did some study in this area to help people that are suffering. A Nureo apt can take months when we need help now.
I hope you get help soon and answers x
Hi, I have just posted on here, am in your shoes but older, I'm 54 this year, like you got diagnosed last October in London by I've forgot sorry, I have been told no drug or operation can help me get better. The best place for me is in bath as an in patient, it has long waiting list, like you my stymtoms can change, alter, be anywhere on me, the worse are severe pain, that slowly alter too pain then release but followed by such tiredness but if lay down more pain. I was told long time ago the dr in London hospital is only one who can help me to get better, still waiting. I think your family must be keeping you going as I can rarely see mine and the loneliness is awful. There is sooo much more I could say but I've forgotten most of the last 2 years, just bits of memory but jumbled and wrong. I wish I could help you and myself but I will forget. First time I have tried to talk to anyone else like me as I wander off and just forget. Hope you get answers from someone even if they aren't great to hear, better knowing why you feel how you do then worrying and wondering. Good 😊 luck. Lisa. 😘
Hi it's the most awful thing you could inflict on anyone and the worst part of all is when people just look at you and say " you've got what" never heard of that. They just have no idea how debilitating it is. I can't do or go anywhere on my own due to horrible seizures that leave me paralysed and unable to speak and can last up to an hour . Thank goodness for this forum as I feel so lonely most of the time. Hugs to you and all on here x
I understand completely don't feel alone xx take a nap when you feel like it if your pain free. I remember one gym bunny lady saying to me oh your so tiny you look great. I just looked back at her and said maybe so but it's not healthy. She said oh I wish I had whatever you've got!! Not a clue. 🙄
That was just picking the kids up from school in Spain. I felt like saying oh ulcerative colitis is a frigging joy! I love garlic etc. It's like poison for IBS etc.
I get it and many others will your not alone.
Today I'm pain free but like a zombie. But good.
🌸💞
Your not I'm in the usa and a couple days ago I was walking and talking but with movements. I too have a job, mine is in automotive trade. I work around machinery and use equipment that is hazardous. I have a family to take care of and I see a mental therapist because neurologists say they cant treat me and I have to work it out.
One I'm talking the other I'm not walking right or the other is when I cant talk right. When will I be normal again is my question too. Cheer up your kids love you and need their role model
Newly FND Diagnosed what now??
just a rant
Life with fnd
20, Recent Diagnosis of FND and Very Confused
