Functional Neurological Disorder (FND)

tcellmutation
tcellmutation Online Community Member Posts: 339 Empowering
edited October 2021 in Rare, invisible, and undiagnosed conditions
I have numerous autoimmune disorders but just last week I've been diagnosed with FND. Never heard of this before but after much research i'm very hopeful to be eventually with the right help to able to walk properly again, stop getting tired in the day and randomly losing my vision. I also have Non-Epileptic Attack Disorder (NEAD) so I'm hoping with a lot of work i can drastically improve on what I thought would just not be possible.

Does anyone else here have FND? Would love to hear from you and if you have any helpful info / experiences

Thanks

Comments

  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @tcellmutation how are you feeling about your new diagnosis? @hdeakin has FND and i'm sure she will be happy to share her experiences with you :)
  • tcellmutation
    tcellmutation Online Community Member Posts: 339 Empowering
    edited June 2021
    Ami2301 said:
    Hi @tcellmutation how are you feeling about your new diagnosis? @hdeakin has FND and i'm sure she will be happy to share her experiences with you :)
    Thanks so much! I'll reach out :)
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    edited June 2021
    Hello @tcellmutation

    I'm glad the FND diagnosis has brought with it some hope.  Have the hospital team put together a plan of treatment and support?  

    The charity FND Action have some online support groups that might be handy to connect with others with FND.  And, FND Hope UK have lots of useful information more generally (which you might have come across during your research!).

    Lastly, some of our members shared their experiences a while back on this International FND Awareness Day thread :)

    Please keep us updated with how you get on and we're all wishing you the very best.
  • hdeakin
    hdeakin Scope Member Posts: 123 Empowering
    edited July 2021
    Hi @tcellmutation
    Thanks for the tag @Ami2301
    Sorry for my late response. Yes I have FND and some other illnesses. I am glad it has given you some hope. The websites Cher suggested are good. I write a blog https://hannahshope.co.uk which you might find interesting. Particularly these three articles but feel free to browse! 1. https://hannahshope.co.uk/?s=Fnd
    2. https://hannahshope.co.uk/the-art-of-pacing/

    3. https://hannahshope.co.uk/my-stay-at-wolfson-unit/

    The wolfson unit is a great place for inpatient treatment. I don't know where you are based but proff Edwards at St Georges is lovely and really knows his stuff.
    Best wishes,
    Hannah
  • Jinny007
    Jinny007 Online Community Member Posts: 8 Listener
    We have recently found out that my 28 year old son has FND. This webpage was suggested:
    Our son has various pains and memory problems. He has bought items that he didn't want and didn't remember buying them. I'm now thinking about doing Power of Attorney so that we get more control over his bank account. I hate the fact that it is so easy to buy stuff once your bank card is registered to ebay or paypal.
    Does anyone have any suggestions how to cope with finances?
    thanks

  • hdeakin
    hdeakin Scope Member Posts: 123 Empowering
    Hi @Jinny007 I am sorry to hear about your son's difficulties. Could you ask about being referred for any rehab programmes eg the wolfson unit see link above- I have written a blog post on it. Maybe they could help him manage it better. The Power of attorney may be a good idea. I am afraid I don't have any other ideas but others may. Good luck. Best wishes, Hannah
  • tcellmutation
    tcellmutation Online Community Member Posts: 339 Empowering
    hdeakin said:
    Hi @tcellmutation
    Thanks for the tag @Ami2301
    Sorry for my late response. Yes I have FND and some other illnesses. I am glad it has given you some hope. The websites Cher suggested are good. I write a blog https://hannahshope.co.uk which you might find interesting. Particularly these three articles but feel free to browse! 1. https://hannahshope.co.uk/?s=Fnd
    2. https://hannahshope.co.uk/the-art-of-pacing/

    3. https://hannahshope.co.uk/my-stay-at-wolfson-unit/

    The wolfson unit is a great place for inpatient treatment. I don't know where you are based but proff Edwards at St Georges is lovely and really knows his stuff.
    Best wishes,
    Hannah
    Thanks Hannah. Read your blog. You sure are some trooper!

    I have the following auto immune conditions...

    Underactive Thyme (when I was 16)
    Pernicious Anaemia (26)
    Encephalitis (28)
    Type 1 Diabetes (28)
    CTL4 Mutation

    Non-Epileptic Attacks (28)

    I'm now 35 going on 36. I take Prednisone and Sirolimus which is an immunosuppressant. Those plus epileptic tablets and others like Amitriptyline etc.

    Me, my mum and my sister have a rare t-cell mutation which is what triggered the Encephalitis. The only thing that stoped me from being constantly sick, being able to move my head and being able to semi walk was IV Prednisone then down to tablets.

    Then, a few months back my uncle suddenly fell very ill. He was taken to hospital. They didn't know what was wrong with him until they realised he was related to our family. Sure enough he had the t-cell gene mutation and is now taking prednisone which is the only thing that keeps the immune system under control (from attacking itself).

    If I come off of Prednisone I literally can't walk, head pressure. Being sick and back in hospital with IV Prednisone which then gets me better.

    So all that out of the way, I've been diagnosed with FND. If this is correct which I hope it is, are they saying I can slowly decrease and eventually come off of my Prednisone? I completely understand about the epilepsy tablets slowly coming off of those but this sounds preposterous!

    Can I have FND plus have an auto immune disorder which in itself has the same effects as FND?

    My neurologist has said (prior to my diagnosis) that I have to stay on prednisone and can't come off of it.

    Anyone?  :D

  • Melaniecloud1985
    Melaniecloud1985 Online Community Member Posts: 8 Listener
    edited June 2022
    @tcellmutation
     hi sorry to hear of your Neuro disorder. I have transverse myelitis amongst other autoimmune conditions, as well as severe mental health issues so am on a lot of meds.  what epilepsy med are you on if you don't mind me asking. I have been on Lamotrigine for about 10 years. I was originally also on that same steroid prenidoslne when my neurologist first diagnosed me, but he took me off it. I had the worst headache for months and it took me a long time to be able to walk properly. I have permanent sensory loss in parts of right foot and areas in my abdomen, get vertigo and exhaustion and vision issues. But my Neuro tried many medications  I now take Lamotrigine for the uncomfortable sensation for the sensory loss. I can walk sort of, not well due to sensory loss and fatigue, but the Lamotrigine helps with the vertigo and pins and needles feelings.
  • bluefox
    bluefox Online Community Member Posts: 647 Empowering
    tcellmutation said:
    I have numerous autoimmune disorders but just last week I've been diagnosed with FND. Never heard of this before but after much research i'm very hopeful to be eventually with the right help to able to walk properly again, stop getting tired in the day and randomly losing my vision. I also have Non-Epileptic Attack Disorder (NEAD) so I'm hoping with a lot of work i can drastically improve on what I thought would just not be possible.

    Does anyone else here have FND? Would love to hear from you and if you have any helpful info / experiences

    Thanks
    I was diagnosed with Non-Epileptic Attack Disorder due to seizures but have also developed tics, jerking movements, difficulty walking, chronic pain and other symptoms. 

    I’m due to go back to a neurologist for further opinion. How do you find coping with the non epileptic attacks?

Categories