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FND

TracybuchananTracybuchanan Posts: 2Member 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?
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Replies

  • JennysDadJennysDad Posts: 2,308Member 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 Posts: 660Member 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 Posts: 11Member Listener
    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 Posts: 4Member 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 Posts: 11Member Listener
    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 Posts: 2,162Member 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 Posts: 1Member 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 Posts: 56Member Connected
    It's been suggested amongst other things. 
    A laugh a day keeps the psychiatrist at bay. 
  • susan48susan48 Posts: 2,162Member Disability Gamechanger
    There’s a very large umbrella that covers fnd. There good info on YouTube 
  • Chloe_ScopeChloe_Scope Posts: 1,999Administrator Scope community team
    @mg94, here is another FND discussion you may find useful :)
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