Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: Possible diagnosis in the new year!!!

  1. #11
    Forum Member
    Join Date
    May 2018
    Posts
    209
    Hi Daniel and welcome to the forum,

    The uncertainty is really hard and I am not surprised you are going to see a private neurologist, although you shouldn't have to. I really hope they are able to give you some answers and peace of mind in the new year.

    I wish you and your family a happy Christmas and hope you are able to put your worries aside.
    Love Debbie

  2. #12
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,699
    Hi Daniel,

    There is a marked difference between what an EMG would show for a person with BFS V awhat it'd show in a person with ALS/MND.

    BFS is not associated with nerve damage, ALS is, and this damage is picked up by an EMG, even before tangible loss of function is noticed by the individual.

    The tingling, numbness and widespread nature of your symptoms all tie in with the diagnosis you received.

    Sorry that your symptoms are increasing - stress and anxiety make symptoms worse, so it can be a vicious circle unfortunately. Hopefully you will be reassured at the Neurologistís appointment.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
    Forum Member
    Join Date
    Jun 2018
    Posts
    25
    could be many things so don't go worrying yourself. my diagnoses took 18 months. by the time it came around I was ready for the fight. our minds and bodies are amazing things and overcome most things and lead the rest a right merry dance

  4. #14
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    461
    I love your positive 'iron will' attitude. It is good to hear that you look on the bright side of life despite the challenges that your face it sounds like you confront every problem with a solution - I like that strategy! (athough, I sure do agree with you that those high kerbs you mentioned in another thread can definitely be little devils to tackle!).
    Last edited by Kayleigh; 14th January 2019 at 00:19.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #15
    Forum Member
    Join Date
    Dec 2018
    Posts
    5
    Hi everyone and Happy New Year,

    Thanks for taking time to post all the positive comments - you have all helped so much!!

    I understand that there is a marked difference on a MND/ALS EMG and a BFS EMG and that my symptoms are widespread without any loss of function / weakness with sensory issues which all work in my favour and this is what keeping me positive prior to my Neuro App on the 25th.

    The only negative issues that have me worried as BFS wouldn't explain these symptoms are that the skin at the back of my hands has lost a lot of elasticity and also seem a lot skinnier and the loss of muscle mass especially in arms and quads obviously this is only my perception and the Neuro might think differently, I understand that anxiety and stress of my situation hasn't helped and hopefully with the all clear on the 25th I can move.

    I will be in touch hopefully with some good news on the 25th.

    All the best and thank you,

    Daniel x

  6. #16
    Forum Member
    Join Date
    Jun 2018
    Posts
    25
    Quote Originally Posted by Kayleigh View Post
    I love your positive 'iron will' attitude. It is good to hear that you look on the bright side of life despite the challenges that your face it sounds like you confront every problem with a solution - I like that strategy! (athough, I sure do agree with you that those high curbs you mentioned in another thread can definitely be little devils to tackle!).
    thank you. I think its right you say it as it is in life, (not just illnesses) ok I have MND but as of right now I am feeling good. yes i'm now in a powerchair full time but it's cracking chair, it tilts and I fall asleep whenever I want lol. I know whats coming course I do but I aim to beat Stephen Hawkins record. I am 64 and still work 6 days a week, some people with MND get nowhere near that age.

    its just those bloody curbs

  7. #17
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    461
    Hi Iron Will,

    Statistically, I am unlikely to reach your age, but maths is not my thing, and statistics - no interest in them either!

    I would rather focus my mind on getting on with life, with enthusiasm and a positive attitude.

    Amazing that you are still working 6 days a week - good for you!

    I agree with you that a powerchair is a wonderful and liberating thing. We can even use them on buses these days. I can whizz up and down the bus ramp, no problem in my powerchair.

    But getting to the bus stop is another story - not so easy, due to those pesky kerbs!

    A message for local authorities:-
    'Crop those kerbs. More drop-downs please!'

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 14th January 2019 at 00:20.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #18
    Forum Member
    Join Date
    Dec 2018
    Posts
    5
    Hi everyone,

    I had my Neuro appointment this morning and was diagnosed with Functional Neurological Disorder (FND) as you can imagine this has come as a great relief.

    I would just like to say thank you to you all for taking the time to answer my questions and give opinions whilst struggling day to day with this terrible disease you truly are wonderful people!!!

    I let this consume me for the last 4 months - I let my anxiety send me to some very dark places spiralling out of control (Never knew anxiety was such a powerful thing????) - but with help I am determined to move on.

    You will always be in my thoughts, good night and god bless!!!

    Daniel

  9. #19
    Forum Member
    Join Date
    Jul 2018
    Posts
    191
    great news Daniel. Take care

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •