I was diagnosed with a functional disorder in May. It started when i experienced involuntary movement in my foot, it was on a loop and would not stop, i was told to ignore it and that it would go away by my GP. At the time i was sitting my university exams, and then one morning i had a seizure (i don't suffer from epilepsy) it was frightening mainly because i didn't expect it i guess, but it was like a wave which went through my body and i just couldn't stop. I remember my mouth hanging down, it felt like a stroke and then i passed out and couldn't remember much, the last thing i remember was just thinking - am i having a stroke? am i going to die? i never got to say the things I wanted to. I came round and was taken to hospital via ambulance and was obviously admitted, my foot was still jerking and would not stop i couldn't sleep because of the constant movement, the next day i had another seizure i bit my tongue and was bleeding had foam coming out of my mouth it was horrible, i was then moved to the neurology ward. My foot was still jerking and the neurologists were confused for awhile as it wouldn't stop and was constant throughout the whole day, nurses would come in the room to monitor the progress of my foot to see if there was any change in the movement. I was put on medication after my second seizure as I had tonic clonic seizure (which I read from my discharge papers). My seizures had then stopped which was a relief. My foot was slowly starting to calm down too, but i lost the sensation in that left foot i couldn't feel anything and my legs were in so much pain, it was so difficult to deal with. I then started to experience body jerks but it would only happen on the left side of my body where my mouth would hang down again but i was conscious and could feel it, it would only ever affect my left side of the body, this use to happen a couple of times a day, i just watched myself slowly deteriorate and there was nothing i could do. I lost power in my left leg and slowly was finding it hard to walk and then i was bed bound. I thought life couldn't get worse, my mum would come to the hospital to wash me and brush my hair because i just couldn't move my body. I knew life had to be better than this, i found hope, i worked hard with physio who helped me to get back on my feet, i became so determined, i was given morphine for the pain which helped me. I was then discharged and received home recovery and then eventually was able to use a walking stick, it was hard for me to leave the house because i was so afraid of these body jerks as i couldn't control it, my parents were frightened. All i wanted was normality, 2 weeks ago i stopped using my walking stick and now have started to walk independently again (short distances). I get these tremors running up my leg at times and i find it extremely hard to concentrate when it comes to exams and sometimes my words get all jumbled up and i feel stupid speaking to people because it just happens. This is the first time I've shared my story of fnd because i was scared of being judged. I have good days and bad days and its hard for me to talk about it because it was the hardest thing I've ever had to do, when i couldn't walk i was so emotional and the day i put my foot on the ground and i could feel the carpet i was so happy i knew i had the strength to walk again. I was so grateful. Mentally i find it so hard to concentrate and remember things and even to just talk to people its hard for me but in time i know i will get there. Even though i missed my university exams i am able to re sit them again when i feel ready, i still struggle to cope with the tremors i experience or worry when or if I'm going to have a body jerk and then loose the ability to walk again, but i always have faith and i know in time i can be okay and lead some sort of normal life. I will always remain grateful and hopeful and remind myself no matter what happens next i must deal with it and never to run away from the matter. I still am on medication and prescribed morphine for the pain. I try to carry on despite how i feel and am determined to finish my economics degree to better my future.
Thank you for reading!
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roxx
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Wow! It's Lucy from Brighton...just wanted to say you are amazingly brave.
Just one step at a time....that's what I keep telling myself. Here's to you though fellow fnd sufferer...PSI just managed a slow walk around corner to local shop too without my stick we need to celebrate these achievements...as they are huge to us. Many on here will also conpletely understand.
Small world eh. I moved to bhwc (Brighton and Hove well being centre) on western rd by Norfolk Sq about a year ago. They are all lovely there. I have found Dr mungo Morris especially helpful, when applying for my blue badge.
The survey offer holistic therapies too like acupuncture etc etc nice to have both at hand.
Let me know how you get on and if I can help any further.
I'm also seeing a sports therapist at studio57 by Hove station, helping with exercises to help my walking a little we hope.
Thanks for the tips. I'm over by poets corner and just found the tree of life centre so going to give that a go and see what they recommend but will look into the bhwc. I went to studio 57 a while ago pre diagnosis so might be worth going back to see what they suggest. I hope they can help you, they seemed really nice there and very welcoming plus a good setup.
I have been referred to see a dr mark Edwards at St. George's hospital but appointment not till November.
Why do neurology appointment take 6-9mths to get! Guaranteed whenever I have an appointment it's on a better day and I'm feeling not too bad ha! Sod's law!
Good luck with everything and Keep me updated would like to stay in touch x
Roxx, did anything happen pre-ceeding all this beginning. A virus, accident, any event. I always find something that sets it off. The face you were diagnosed with a seizure disorder and actually became unconcious, makes me think more may be going on, especially if nothing pre-ceeded it. please let me know. Also for the tremors, I have found that ativan quiets them down a bit, although not completely. For the foot, did they have you see a movement specialist, sounds like it could be a dystonic problem. Lots of questions for you. Your going to be ok though, because your strong and determined, have family support, and most important staying positive, its when we give in to this thing, that we let it win, I am determined to never give in, when its over God will take me home, till then I do what I can when I can, the rest I can pray. God bless, Cathy
Hi, and nothing i could think of it all just came out of the blue, the foot movement started first and the neurologist mentioned mycolounus but i had several tests done, i had a CT scan, 2 EGG scans to check for epilepsy an LP where they take fluid from the spine and i had a full MRI done, all of it came back clear. They were really confused and were honest about it and then in the end they put it down to fnd as they couldnt find anything which was causing it and suggested i must be really stressed but truth be told i didnt feel stressed, i guess they had no other answer as everything kept coming back clear, and yes i did see a movement specialist but i saw him once the movement had calmed down (as i was put on medication for the seizures which seemed to calm my foot down too) so he said it was all hard to determine, i just worry about relapsing or if it was to start again but i have my first CBT session next week? thats meant to help the neurologist said. thankyou for your help honestly i feel so much better knowing im not alone, you must be so strong!!! Thankyou!
You definitely have an amazing group here to talk with, and help you in any way. I love having this group to read about, chat with and get advise. They have definitely kept me going in times of loneliness.
Seizures and foot jerking.. I have dealt with a lot of that throughout that years. My questions are, have they completely ruled out Seizures, or are they claiming they are non-epileptic.. If they haven't ruled them out, I would definitely keep on top of them. I myself have both non epileptic and epileptic seizures, which I have never had before all this began, but can start at any time really. The medication I take is helping to reduce the number, but not completely everything. It has also helped to reduce the amount of jerking I experience. I am taking Depakote. Anti Seizure meds are a hit and miss though so trying different things till you find what helps is good. May not be fun to go through, but you need to find the right mix. I tried Keppra before, and it made things even worse, added to the symptoms, and even gave me new ones. It was horrible. Right now I am on Ropinirole, Aptiom and Depakote and somewhere between the three have helped.
I think one thing that has helped me is definitely the attitude. staying as positive as I can, and getting out. Keeping myself cooped up in the house adds to the depression of it all. Doing my best to get out, move around in any way I can, assistance or not, really helps to brighten things up and give you a new perspective.
Don't feel stupid about speech. That part has a tendency to get messed up with FND as well. That is the first thing that I started having 8.8 years ago, and still continue to have issues. Finding the patience for that alone is not easy. I hate not being able to talk, get the right words out, having people not understand you, having to repeat when getting it out the first time was horrible enough etc.. There are times I want to keep a small white board or pen and paper at hand ready to write things out so I don't have to try and talk or repeat.
As far as your exams. Stress doesn't seem to help with FND which I know many of us have found out with all of this. I am glad that they are willing to work with you. Maybe they would be willing to let you take them in a room to yourself without others around you? I don't know if that would help or not? Just a thought.
You are in inspiration to overcome what you have. You are not judged here at all ok! This is the safe zone. We all deal with the same but different issues within FND here, and we all know what this has done to turn our lives upside down. What matters is that you keep trying, keep doing your best and don't let FND overtake you. Find things that might help you to relax, to be happy, things that you can enjoy. For myself, I love to draw and paint. I have found that the jerking, seizing etc.. slows down for the most part, and I can do great things that make me happy and help give me some relief for a while. But again I have to remember to get out as well.
As I believe I read maybe Cathy2020 said.. trying to remember.. look into what has happened in your life. Have you had some type of illness, trauma, being overstressed, etc.. that may have been the trigger. They say that therapy can help, something worth looking into, however you do need to find the right one that knows about FND which can be difficult in itself.
Best of luck to you Roxx, and keep up the good work of overcoming this. You will have your ups and downs, just don't give up on the downs! I'm here if you want to chat.
Awww Rox ... Thank you for your story and I do so hope you continue to improve ... I can so understand your fears too .... But also your determination. Quite a lot of your symptoms were similar to mine and yes it is very scary and I had my diagnosis in May too ... I had worked as a physio for 8 years in a Neuro ward and like you thought I was having a stroke ... And like you worked hard to be 'normal' again ...i have come off all drugs except Amilytriptain as this helps with my ongoing symptoms ... But I felt, as all the drugs I was on or offered I just wanted to know what was 'me' now rather than a side effect... I have now totally changed my diet, a have actually managed to get myself back to work part time .... and although I've had a few blips ... Which have again scared me ... My Neuro physio is so supportive ... My consultant although 'kindly' gave me the FND diagnosis I know as he does .... 60% of new Neuro consultations end with the FND diagnosis ... No help to us I know ... Or them I'm sure .... Please never feel lonely or scared ... Come on here and talk to us!
Thank you for sharing your story with the group Roxx as there maybe other people here who may have experienced similar. Keep on persevering as it really is not easy going through the variety of symptoms that we all experience with this condition.
Nine months on roxx. How are you fighting it today? On the attack or on the ropes?
I am on the attack.
The clutch of original responses said so much truisms - like avoid stress, don't blame yorself etc. I would add 'read, research, share, adopt and maintain an I bloody well will attitude. I can and I will. I will.'
You will learn much from your fellow 'travellers' on the FND path. One thing is that the professionals do not always have the answers. Some, like Prof Edwards in St George's are head and shoulders above the run of the mill, I am just as mystified as you, mob.
We have an advantage over the professionals. We have experienced FND personally. We have insight that we share or can do so.
FND may be the out-tray of the I don't have a bloody clue what's wrong diagnosis for many neuros. But it is real. It is a recognised condition. Research is ongoing. There is unlikely to be a magic cure or bullet but there are treatments and therapies which can and do help.
There is also the incalcuable benefit of the fellowship of others who know first hand how it FEELS.
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we need to celebrate these achievements...as they are huge to us. Many on here will also conpletely understand. 
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