newly diagnosed

Hi, my name is amelia. 33 and just diagnosed with FND. had it for 4 months. I had something similar 4 years ago for about 8 months but with no involentry movement. at that time MS was ruled out in my brain scan. and Lyme disease was ruled out. I am really ill, fizzy limbs, involentry movement and spasm fits ( thats what i call them) pain, fatigue, stutter and word finding probllems and weakness. Really struggling. Had to resign from work. I am waiting to try physio therapy. I need a stick to walk and can't go far, the more i do the worse the involentary movement gets. Today i went to see the GP and begged for anything to just give me a break from the symptoms. Because I had a recent EEG and it was normal neurology referred me back to the GP saying it was a functional disorder ( which i had to google and found FNDHOPE.ORG, thankfully) and the GP can't prescribe anything for the twitching/spasm fits because the electrical activity in the brain is normal. I cried today. GP was so good but his hands are tied. My hubby asked if he could sedate me to ease things. He prescribed co codamol to see if it helps the pain on painful days and to see if it helps anything else, but he really didn't know if it would. It hasn't helped the twitching at all, the fizzing does feel less intesne but it might have eased off, but cognatively my head feels all dopey and I don't like it. So i think it will just be for pain days. I have had to apply for accesability housing because I stairs are such a challenge as is the bath and shower. I tried to get a wheel chair so i can go on days out, neurology advised against this. basicly from working and enjoying a life with a young family to being almost house bound and needing help to chop vegetables and needing to rest after brushing my teeth. Its been an awful experience. Most days i try and have a good attitude but i felt so desperate today. I even sought out an chinese medicine/accupuncture clinic and he didn't want to start a course of treatment because he did not know what he was aiming at. .....Sigh. Anyway, Hi and hello to all.

15 Replies

  • Hi Amelia, I'm sorry to hear of your condition It is just a nightmare for you and us all, I too was like you and I paid to see a neurologist privately he then referred me to Dr Rickards at the QE Birmingham, he specialises in FND and has been a great help... It does depend on where you live as to what help you get...There are support groups that he sent me too and also prescribed medication Nerve blockers first amitriptyline and now im on Duloxetine you really need to see if you can find a Neuropsychiatrist that is what Dr Rickards is... I also joined FND on facebook its really good support... I hope this has been of some help and always here to talk xx

  • Thank you for your reply and advice, I will discuss this with my GP When i next see him

  • So sorry you have needed to join us, but here YOU ARE NOT ALONE.

    There ARE medications that may help reduce some of your symptoms. I'd suggest you join us in the main Facebook Group where you will find great support and knowledge form others in your situation. Go to the homepage of and click on the Join Facebook Group button. (an admin will contact you). It is a Closed group so anything posted there is visible to members only and will not appear to your other Fb friends).

    I would also suggest you ask your GP to run some blood tests, namely B12, Ferritin, Folate and Magnesium. Some of us have been found B12 deficient (although within the "normal" range) and boosting it has helped reduce our symptoms.

    There are over 1500 worldwide in the group so plenty of info wherever you live.

    Best wishes to you.

  • Thank you for your reply. I had all the blood work done while waiting to see the neurologist. All blood work was normal as was the EEG. I had stroke and MS ruled out 4 years ago when i had similar symptoms so this time I was diagnosed as having a functional disorder. I have applied to join the facebook groups. :-)

  • I'll see you in the Fb group, but just to say be careful with their idea of B12 being "OK". It is being found that many reduce symptoms when giving loading doses despite being within the "standard" range. PLUS if you take one snapshot level it may be misleading. I gathered mine for 5 hospitals over a 2 year period and found it was yoyo-ing wildly. When my GP was shown this she agreed to try me on them and WOW did it ever make a difference! Speech was much clearer and easier, walking also, energy levels rose and CogFog cleared a lot.

    So well worth asking for your exact reading and also another test. Normal range is 200-900 ng/L but there is a lot reckon this should now be re-assessed for those with neurological symptoms and find 400 is nearer the minimum. Even then, if you have neuro symptoms it's worth asking to TRY loading doses and see what happens as you cannot "overload" on B12.

  • Thank you, I will ask my GP :-)

  • Hi, I am so very sorry to hear all that is going on with you and in so short of time. I can truly relate as that is how quickly mine came on when it first did. mine was when I was 39. I too had a very young family. I was homeschooling my two youngest. I had recently had a very bad brain surgery that had almost killed me coupled with a spinal leak. If you have a very compassionate GP who is willing to try a few things, ask him if he would be willing to try an anti-seizure med. It is worth a try. It does help with some of us, not all. With me it has helped very much. I have responded well in the past to Tegretol, primidone, and now am taking topomax. I only take one at a time. After a while my body seems to adjust to them and they need to switch them up. I also take sinemet, as I am dopa-responsive. That works great for me. I will keep you in prayer. Pray today is a better day. God Bless, Cathy

  • I may need to see another GP, the one i have is compassionate but wont precribe anything as the EEG was normal.

  • That is really sad to hear. I am very very sorry. She should want to try anything that would help, if it does help great, if it doesn't nothing lost for trying. So sad, if it were her/him they would want to try anything to alleviate their own suffering. I will never understand the medical profession industry as a whole. Keep looking. Never seeking to find the help you need. I am having a bad day today. Went out in church. Very funky. Hoping to come out of it soon. Hope your day is better. Cathy

  • Hi Amelia, I'm sorry to hear u are suffering, I've been suffering for over 5 years now, I'm wheelchair bound nearly, I can walk with sticks, but not for long, like u said the more I walk the worse I am, pain is unbearable at times too! I have jerky movement, also I have no voluntary movements in both legs, ive lost my job which I love, I've lost most of my friends too! I'm lucky my children are grown up now, my hubby has been fabulous through this bloody nightmare, I've been to many doctors, neurological doctors, many have been horrible to me, I've been told many times it's all in your head, your brain is playing tricks on you, u are doing it to yourself in some way! It's stress, go home and sort yourself out,!! The amount of times I've cried myself to sleep, who in their right mind would like to be like this!!!! So I totally understand where u are coming from, please join your Facebook group, u are not alone, u must keep positive, one day at a time, also do u get any help at home? If not, u must ring adult social services, ask for an assessment, u will be given a social worker, who will help u get the things u need to help u, she will organise an OT, who can get u a chair for your kitchen, banister for your stairs, even a stairlift if u qualify that is! Or a wet room! She may even help u get house move u need, have u applied for DLA, the new PIP disablity benefit? Go and get advice from a benefit adviser too! Hope this helps, thinking of u, hugs Marie x

  • Thank you for all your advice, I have pip but i have not contacted social services. I will do that this week. I am just at the early stages. I did have similar 4 years ago but i had visual problems and not involuntary movement. The neurologist was horrible. This time the neurologist listened and he could see my involuntary movement. But the EEG was normal and i was put back to gp with the diagnosis of functional disorder. I cried so much because i felt abndoned. I start physio on Thurs, I hope it is effective.

  • Hi Ameila, My name is Stuart I'm 36 and was diagnosed last week. I have had this for 15 years and gone round in circles many times to arrive here. Your not alone, my neurologist said to have a look at this site and a lot of the information on there is very useful. I hate the spams too, if the fatigue were not bad enough! This whole thing is crazy and really doesn't make much sense, the Neurologist said there is a problem with my software, would this mean I have a virus or a bug? I know this is an analogy but a computer does not glitch unless it is corrupted? I find it real difficult to accept that I am inflicting this upon myself and for yourself with a young family why on Earth would you want to do that? It just doesn't make sense. I had to give up work too just after my son was was born I went in to hospital and was tested MRI, lumbar puncture nothing found.

    I hope you are not feeling too bad today. Since I have been on bottled water I have felt much better a month now. I believe something disrupts our sleep and that is where it all stems from, more than stress and worry. Our sleep is like a washing machine cycle and if doesn't go through all of its stages then it wont wash your clothes properly. I have slept poorly for years its hard to switch off.

    Keep in touch.


  • Hi Stuy, It is frustrating isn't it. I don't understand the stress causing it, because i was not stressed in any way when this hit, if anything i was at my happiest. I managed to volunteer today i run a group discussion but i felt so awful, fighting through it was tough and my speech was the worst it has ever been. I slept for 2 1/2 hours when i got home, and feel like i have been hit by a truck and that i am made from fizzy jelly. I start physiotherapy tomorrow hoping it helps my mobility. Thanks for the contact :-)

  • Hi Amelia, how are you today? I'm Sarah, I had to message you as so much of what you have said is similar to my own fnd symptoms. The fizzing and popping you mention - I get that too, it's always worse on days when my symptoms are worse. I have a stutter/stammer, even saw a speech therapist as I hadn't lost the ability to speak - at times I literally can not speak! I've spent about a year and a half walking with a stick due to my right leg, the pain is so intense and unbearable. I'm lucky for the time being, this symptom has eased, enabling me to find a new job. The "twitching" you mention though is getting worse for me. If I hold things like a phone, my hand will jerk/twitch, writing is becoming increasingly difficult as I jerk whilst writing. Just today I went to the opticians because of blurred double vision. The optician said either my illness or the medication was causing the problem, I'm back on Wednesday. Anyway, please don't feel alone. I've been on here a while and you're the person that's sounded the most similar to myself. I'm 32, I have 4 and 3 year old girls. I've found this illness incredibly difficult. Please message me if you want to talk further, I'd love to hear from you. Sarah x

  • Hi there everyone!

    My name is Kim & i have been diagnosed with Functional Movement Disorder.

    I collapsed in November 2012 in the NEC Crafts Fair in Birmingham.

    Had many tests done and also lost my job back in 2013.

    I have spasm's in my right leg & tremors along with muscle twitching and

    my foot also twists inwards occasionally.

    The last two years have been life changing as i was so active and i'm only 36.

    My Husband helps me so much & he feels helpless sometimes when he sees

    me in pain with this disorder.

    I can't wear my boots anymore as they affect my balance so i wear flat soled shoes.

    I take Baclofen - 5mg- three times a day but although it helps it can cause muscle

    weakness & my leg can collapse inwards so my Husband is with me all the time.

    I can't go out on my own & have been in a wheelchair at it's worst.

    Depression is a big thing with me and as my Husband works p/time of a night i

    get very lonely with it all and feel vulnerable.

    I'm new to this site and am so glad to have found it.

    I will be trying a Leg Brace next month as a last resort.

    My Neurologist thinks it may 'retrain the brain' so to speak so it could go back

    to normal again.

    Has anyone ever tried this or know of anyone who has?

    I would appreciate any replies.

    My best wishes to everyone with this disorder and hope you find relief one day.

    Thank You!

    Kim Smith

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