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Thread: Not diagnosed but concerned

  1. #11
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    Hi Ellie,

    Thank you for your reply ,it is an ongoing nightmare and I still do not know what is causing the muscle loss etc.

    On last EMG only finding was 'Chronic neurogenic changes' which is was told pointed toward radiculopathy in the Spine but I struggle to accept this as symptoms are bodywide and I have muscle loss in left leg/arm and hand .

    I also struggle to accept BFS diagnosis because of the muscle loss but take on board what you say about the fact that I would have experienced some sort of failure by now.My first symptom was back pain in lumbar region Xmas 2016 and noticed fasciculations April 2017 in left calf so 22 months now of twitching in that area and now widespread all over but no failure just pain .

    I have spoken to MNDA helpline and they have been great and very advisable and told me it is pretty much unheard of to have fasiculations for nearly 2 years with no failure .

    I feel I am going off my head with this as going round in circles and the atrophy is what makes me think its MND ,saying that I first noticed size difference in legs in July 2017 so again a long time (nearly 20 months)

    Thank you again and my best wishes to you .

    Andy

  2. #12
    Forum Member Ellie's Avatar
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    Andy,

    Your EMG results mean it is not ALS.

    It's time you start trusting your various Doctors and stop letting the notion you have an MND consume your life. (Tough love advice)

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #13
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    Hi, I live in the same area as you: get to see Ashwin Pinto for a diagnosis, and Louis Merton for EMG/NCT. Can you still walk?

  4. #14
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    Yes I can

  5. #15
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    Really hard not too Ellie with so much going on in my body -thank you again x

  6. #16
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    Did they diagnose you?

  7. #17
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    Yes Andy,
    Ashwin took about an hour to do a full neuroexam. I think you have limb onset ALS from what you describe, but I can’t see your fascics. Chronic neurogenic changes is just a generic term- meaning your EMG signals are wrong.
    Some consultants do not want to give a definitive diagnosis, or rubbish like “suspected ALS” “working hypothesis”, this is because they are cowards or don’t want you to qualify for a PiP on a DS1500. Trust no one and Everbody Lies - Dr House.

    I think you have seen Bill Gibb privately?He is an idiot

    The woman neurologist is Georgina Burke?
    Last edited by jonboy53; 1st March 2019 at 09:14.

  8. #18
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    I have spoken to my wife and she suggested that you come and see us and we will get you up to speed with knowledge, and who to see to get a firm diagnosis. My wife is now MND expert with skills way beyond any help you will get from the so called “multidisciplinary team” - the neuro OT team is truly ghastly. Solent NHS is the worst in the country for neuro and mental health provision.

  9. #19
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    Quote Originally Posted by jonboy53 View Post
    Yes Andy,
    Ashwin took about an hour to do a full neuroexam. I think you have limb onset ALS from what you describe, but I can’t see your fascics. Chronic neurogenic changes is just a generic term- meaning your EMG signals are wrong.
    Some consultants do not want to give a definitive diagnosis, or rubbish like “suspected ALS” “working hypothesis”, this is because they are cowards or don’t want you to qualify for a PiP on a DS1500. Trust no one and Everbody Lies - Dr House.

    I think you have seen Bill Gibb privately?He is an idiot

    The woman neurologist is Georgina Burke?
    I am convinced I have it but 4 Neuro's say no -yes saw Gibb -what a waste of time he told me it was all in my head , I am due to see Neurologist I saw privately last summer at Southlands in Shoreham but this time under NHS , he was adamant I did not have MND but symptoms progressing and I am getting no answers -have had 4 Neuro exams including one at Southampton Neurological centre ,can I ask how long it took for you from symptom onset to diagnosis?

  10. #20
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    My timescales and symptoms are IDENTICAL to yours except mine is the right side. I went privately to a GP on 13/10/2019 - by 17/10/2017 I had a “suspected” diagnosis from Gibb.
    I did some research to find a consultant that was not autistic like Gibb. Found Ashwin Pinto. He gave me a firm diagnosis in early November 2017.

    private GP = 90
    Neuro exam = 275 two of those
    MRi scan = 350
    Bloods = 500
    EMG/NCT = 165 plus 90 for use of gear at the QA.

    I had to get another job to pay for private healthcare and all the gear I have had to buy. You try getting a job when you have MND, working at home !!! - I did it though����


    I had to retire early in January 2017 because I was so tired. And I did my own differential diagnosis during the summer 2017 to eliminate all the easy things - diabetic neuropathy, stenosis, B12 deficiency, Lyme disease, radiculopathy, perpheral neuropathy, SA, etc. etc.

    Is your urine darker than it used to be?
    Last edited by jonboy53; 1st March 2019 at 10:12.

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