Neurological conditions
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FND

TracybuchananTracybuchanan Member Posts: 2 Listener
Hi ,I was diagnosed with FND a year ago.I have mobility issues,fatique,arm ,shoulder, neck pain,tremors ,hallucinations,noise intolerance .I am 49,married to a fabulous man and have 2 boys and a dog.glad to be part of this group.any one else have FND?

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    edited February 2018
    Hello Tracy (I'm guessing :smile: ) @Tracybuchanan, and welcome to the community. Good to have you with us.
    I ran quick searches in Scope on FND and Functional Neurological Disorder and, to be honest, did not find very much that was specific to it. That, however, does not prove a lot, and there may well be other sufferers whose posts and conversations haven't highlighted FND in their headings. I'm sure that many of the resources here could prove to be of use to you - about benefits, for example, and dealing with chronic pain. You should find a series of links in the purple band lower down your page.
    I had a quick look off-site, too, and found http://www.fndaction.org.uk/facebook-support-groups/  which, if you haven't encountered it already, might be of use to you.
    So I hope you'll have a look around and tell us a little more about you and your circumstances so that we can look for ways to help and support you. Others will be along to greet you who may know much more than I do :smile: In the meanwhile don't hesitate to chat or to ask any questions that may occur to you.
    Warmest best wishes,
    Richard
  • Lasian_ScopeLasian_Scope Member Posts: 660 Pioneering

    Welcome to the community @Tracybuchanan, it's great to have you here!

    You can have a look at our groups and discussions to see which you would like to get involved with, whether it be to ask for some help and support, or just to chat with other members of our community. 

  • Susan46Susan46 Member Posts: 12 Connected
    hi
    i was diagnosed with FND a month ago. previous to that in april i was
     diagnosed with degenerative disc disease with bulging discs c2 to c7. every time i went to gp he gave me painkillers. i too have tremors, involuntary shakes and spasms, my headaches, neck pain, shoulder pain, back pain, ear pain, short term memory loss, confusion and my arms and legs not working properly, my speech issues....i asked my partner if im going crazy. i was taken into hospital due to severe neck pain and agonising pressure in the head. it was only then did drs actually see what i was having to live like. mri and ct scan showed everything in head ok. after months of waiting i saw a neurologist who diagnosed FND. so i was relieved i wasnt dying or going crazy. 
    FND is a specialist subject sO only medical staff who know about FND should help. im going to start FND physio soon and am on a waiting list for seeing neuropyschologist . FND is when the brain sends and receives messages but doesnt react correctly. all the symptoms are REAL. i had physio sorted but the neurolost cancelled it as FND needs different physio as ordinary treatment could make the problems worse. i will see a neurophyschologist to retrain my brain to think different and hopefully in time i will get better. since march 4th i have been this way and i now use wheelchair to go out with partner pushing me and in the home i have zimmer, comode, shower stool which is a godsend. both bladder and bowel are incontinant since this started and i get exhausted after 5 metres of walking. as soon as i stand im on a rocky boat and even when i sit this happens virtually every day. i cant cook because i have little strength in arms and hands and cant judge distance when going to pick something up. the neurologist aked me what i hope will happen with treatment. i said....as long as i can walk and speak again and stop the depression setting in then that would be great. yep, the tears and the cant do anything mood has set in and im sad a lot cos i feel ive been put to the back of the queue with nhs and ive had to fight every bit of the way to get anything done. im now struggling with sugar levels and my diabetic nurse has told me i must see a specialist now as since having FND my fasting level has gone from 50 to 90 and she says its not what i eat but because im not active now. 
    im off morphine and diazapan as they didnt help me anyway but whats annoying is the neurologist told us that i should up my other meds to a really high dose and would write to tell my gp. my gp hasnt received the letter concerning my meds . on top of that pain management told me to double morphine intake at my initial appointment but didnt write to my gp or myself to say. so we did that on his advice. im concerned that the specialists dont talk to each other or communicate well as im told  one thing then another. but now im diagnosed.....i only do what the neurologist says as he seems to be the only one who understands me and knows what im going thru is real. 
    i know ive gone on a bit about my own FND but having gone and still going thru so much, i feel reading about my experience might just help you even a little. FND isnt something many gps are aware of and therefore try to treat symptoms which could be a number of other ilnedses. i had to beg and beg for people to listen and i fell on deaf ears. tc


  • wavedancerwavedancer Member Posts: 6 Listener
    Hi, I was diagnosed with FND and dystonia  last year. I'm currently waiting for residential therapy in the hope of easing some of the curable problems I have. I'm  having a really bad day today so can't write as much as I would like but just wanted to let you know you're not on your own with your diagnosis. Will write properly on a better day when my brain and hand are communicating better!
  • Susan46Susan46 Member Posts: 12 Connected
    first appointment for one to one with psychoneurologist and she doesnt turn up. sat one hour, receptionist said she couldnt get in touch with her so left my phone number with the woman so she could ring us and arrange another day. no call from her. ive contacted since but still no reply. phoned gp and they getting in touch with her. like me, they agree that even if there was a problem on the day shd could have sent apologies. nothing and its been a week. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    I also have been diagnosed with FND there a good website, can’t remember what it’s called but just type in Functional Neurological Disorder.
    Im at the moment seeing a psychologist  to help with understanding and dealing with the symptoms. I have involuntary body movements and sometimes cannot speak properly.
  • DemRedDemRed Member Posts: 1 Listener
    Hi everyone, its not a site I wanted to join but here I am with a new diagnosis of FND.

    I've been going to the neurologist for ten years for peripheral vision loss (nothing wrong with my eyes), facial spasms and a big list of other symptoms that come and go. I was so scared this was the start of Parkinson's so I'm very relieved to be told its FND. They still want to do a lumber puncture and MRA and I suppose I should go along with that. I have though, been researching FND and this sounds very much like me, though I'm nothing like as poorly as some of you. 

    Look forward to reading the forums.
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    It's been suggested amongst other things. 
    A laugh a day keeps the psychiatrist at bay. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    There’s a very large umbrella that covers fnd. There good info on YouTube 
  • underdiagnosedunderdiagnosed Member Posts: 24 Courageous
    I've just been diagnosed with FND. Exhaustion, left sided weakness, tinnitus, difficulty with walking and balance etc. I also have various cardiac symptoms which the neurologist said he couldn't explain
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @underdiagnosed, how are you feeling? I know there can be multiple emotions when getting a diagnosis. Is there anything we can do to help? :)
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  • Susan46Susan46 Member Posts: 12 Connected
    i am on FNDhope site and its great that its a group of people who can support and give advice. fnd is really complicated and i have about 20+ symptoms most on an every day basis which has been awful. if you just fancy chat then im an Fnd warrior and have been in your shoes and still am. its frightening and a mystery really but its also real. xx 
  • underdiagnosedunderdiagnosed Member Posts: 24 Courageous
    Thanks for your comments Chloe and Susan. I am feeling Ok thanks I'm quite a positive person. I just need my cardiology appointment (not too long to wait now) to see if they can shed any light on the rest of my symptoms, but I suspect they may still be unable to explain what's happening. My most frequent cardiac symptoms occur during REM sleep which is strange. I wish the 2 departments could combine but I think it may be beyond the remit of NHS treatment. My GP is supportive. I'm not sure if there's anything you could do to help? I may look on FND hope later thanks for your support. Maybe another day though as I woke up 15 times last night with symptoms and am feeling kind of zombiefied!!!
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    I'm glad you are feeling okay @underdiagnosed! I hope the cardiology appointment is a productive one and please do let us know if there is anything we can do to help :)
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  • wifeofwifeof Member Posts: 3 Listener
    Hi all I am the wife of an Fnd suffer. My husband suffers with head pain, arm and shoulder pain, weakness, tiredness, and sometimes the inability to walk or move. I wanted to ask if anyone has heard of a sufferer having the inability to have feelings. My husband seems distant with me and my children and seems to lack any interest or involvement. I wandered if this could be a symptom and if anyone has any ideas of what I can do to help x
  • wavedancerwavedancer Member Posts: 6 Listener
    I suffer with FND and when I read what you asked (wifeof) it made me think. Living with any type of chronic pain can drag you down into depression. I wonder if this is what's happening to your husband? It could account for him being distant and his lack of interest and involvement with everyone and everything. I get times when it takes so much effort to just get through the day that I don't have anything left for anyone or anything else so I 'close down' and withdraw into myself. I guess it's a case of self preservation of sorts. I don't know if it's a symptom of FND as such or whether it's just the side effects of how the FND makes us feel. I'm not sure how much sense that makes or if it helps you understand what may be happening to your husband. Are you able to talk to him about how he feels on an emotional level as well as a physical level? Does he see a neurologist or an FND specialist regularly? Do you go with him if he does? It may give you an opportunity to mention how he is if you do. I'm waiting for funding so I can go to inpatient rehab. This involves being treated by a multi professional (that's not the right word but I can't think what it is at the moment) team which involves a neuropsychiatrist along with working on the physical side of things. This suggests to me that there's an element of emotional problems on varying levels involved with FND. I hope this helps somehow.  It's certainly not easy having a member of the family with FND. I don't know how my partner puts up with me at times!

  • wifeofwifeof Member Posts: 3 Listener
    My husband has had a few sessions of physio and has seen a neuropsychiatrist but only occasionally (every 12 months or so) he has no other input from anyone else. I understand why you are saying regarding pain and the effects but it is extremely difficult to live with especially for the children who miss their dad. 
    i am looking to see if there is any other help that he can get as I am unsure where to go with it as the doctors don’t seem to understand the condition x
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @wifeof and a warm welcome to the community! I cannot imagine how difficult it must be to see your husband like this, and I'm sorry to hear about the lack of support he has received. I know FND can be a condition that doctors can't seem to grasp, but your husbands symptoms are valid and are real. 

    Have you ever looked at FND Hope? They are a charity which explain FND really well and you may find useful. :)
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  • wavedancerwavedancer Member Posts: 6 Listener
    Hi wifeof,
    I know what you mean about the doctors not knowing much about FND. I've been passed from specialist to specialist and it's taken almost 9 years for me to be diagnosed. It was while I was in hospital having an operation for trigeminal neuralgia that I met a fellow patient who had seen the health problems I had and suggested that I may have FND. She'd been in hospital with it for 12 months! Luckily I live in an area where there is a consultant with an interest in it. Chloe suggested looking for FND hope. There is a closed Facebook group run by fndhope. I use it and can recommend it. I know there are some there who are dealing with loved ones with FND. I'm sure you will find support and advice. It does seem like a bit of a postcode lottery as to what treatment is available. Take care and if I can help please don't hesitate to shout. xxx
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Thank you for sharing this @wavedancer :)
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  • wifeofwifeof Member Posts: 3 Listener
    Thankyou for sharing your advice. I will look at Fndhope. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    No problem at all @wifeof, please do let us know if we can do anything else. Also, feel free to have a look around. :)
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  • theladyloutheladylou Member Posts: 2 Listener
    Hi all, I was diagnosed with FND a couple of weeks ago having had a rapid deterioration in my health following a car accident. I struggle with walking, balance, pain, weakness, fatigue, blackouts etc and my speech is severely effected. I have been off work for quite a while and will probably have to give up my job as they cannot keep my position open forever. I was wondering if others have had to give up work and what experiences they have had with rehabilitation. I am supposed to be going to see a speech therapist and neuropsychologist but am still waiting for referrals. How long have people been suffering? Have people made recoveries? Any advice gratefully received. Thanks, Laura
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @theladylou and a very warm welcome to the community! I'm sorry to hear about your deterioration and the impact this may have on your job. 

    Unfortunately I do not have experience of this, but I hope other members will be able to share their stories.

    FND Hope might be a website that can help, they have all sorts of information and support groups.
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  • hdeakinhdeakin Member Posts: 117 Pioneering
    Hello @Tracybuchanan , @theladylou , @wavedancer , @wifeof , @underdiagnosed and @Susan46 ,
    I have just come across this post.

    I have written a blog post on FND if you are interested or it is helpful: 
    https://hannahdeakin.blogspot.com/2019/08/what-is-fnd.html

    I also had a stay at the Wolfson unit where they treat FND as well as other neurological conditions:
    https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html

    Best wishes,

    Hannah 😊
  • theladyloutheladylou Member Posts: 2 Listener
    Thanks Hannah I will take a look at your blog. I hope your stay at the Wolfson unit was beneficial. Laura
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi all,
    last night I watched a catch up of a BBC2 programme... Hospital.
    The Walton Centre Liverpool was featured.

    I was in there in December where I finally got diagnosed with Spinal PPMS, after 22 years of being given the runaround.

    My point is that 3 people with FND were featured. Oh my word! I had heard of it but didn't know much about it till last night.
    What a complicated and very cruel condition.

    A neuro professor had given  specialised physio to a man featured and what a difference it made for him...but very sadly, there was no more money for the trial to continue.

    I am so sorry for those of you affected by FND and wish you all the best and hope you find effective treatment.
    Pollyxx

  • hdeakinhdeakin Member Posts: 117 Pioneering
    Hi @pollyanna1052 I am glad you had a good experience at the Walton centre, liverpool. Gosh that is a very long time to get diagnosed. How do you feel now you have the diagnosis? I imagine mixed emotions. I saw a bit of the programme, it looked really interesting, I am hoping to watch the whole thing soon. But I think others in this group might find it interesting/ helpful to watch. I hope you are all as well as possible x
  • anistyanisty Member Posts: 171 Pioneering
    I saw the programme too @pollyanna1052 and also a woman with FND was one of the participants on the undateables this week.  Not something I had heard about either before these programmes and this site. I hope funding can be found to research treatments and even a cure one day.
  • clare_1clare_1 Member Posts: 123 Pioneering
    Welcome.

    I was diagnosed with FND over 5 years ago now. I'm now 35, I have  many symptoms with FND but my main one is that I am unable to speak properly and my partner and mum have to handle my phone calls and because I suffer with social anxiety also, one of them have to come with me if I ever need to go oppinment ect.

    It has been a very hard 5 years and only just coming round to the diagnosis. It dose take a long time in finding  doctors specialist to understand it is real and not just in your head. From the time Iwas diagnosed,  I lost my 8 year job, they had to let me go beacuse nothing more I could do, I can no longer work as a hairdresser either and we sadly lost our flat due to this and other illnesses I have also been diagnosed with.

    I'm positive part to this is that. Yes times are going to be hard and you will certainly find out who your real friends/family are. Try not to let things get to you, you will have bad days but good days are just around the corner.
    I found for me is to do things on a traffic light strategy. Stop when you feel you need a rest, don't burn yourself out thinking you need to get it all done right then. 
    It's ok to have bad days just try and think of positive things, even if can only think of one thing in a day. Always end day on a positive.

    Know that your not alone and if you every needs chat or a moan. Someone is always about to listen.

    I wish you all the best in getting the answers you need and I'm sure people on here will ha e loads of advice and people to turn to for help if needed. 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    hdeakin said:
    Hi @pollyanna1052 I am glad you had a good experience at the Walton centre, liverpool. Gosh that is a very long time to get diagnosed. How do you feel now you have the diagnosis? I imagine mixed emotions. I saw a bit of the programme, it looked really interesting, I am hoping to watch the whole thing soon. But I think others in this group might find it interesting/ helpful to watch. I hope you are all as well as possible x
    Hi Hd,
    I feel extremely relieved and happy that I finally have a label and know where I belong! I felt lost all those years.
    After so long I cope as best as I can. I do have a really good support system and a great hubby of 48 years!

    I remember you posting how good the Wolfson unit is. I`m glad they helped you.
    Tae care xxxxx

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