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Thread: My Mental Illness

  1. #11
    Forum Member
    Join Date
    Jan 2018
    Thank you Ellie , I want to let it go but symptoms persist like all over Fasiculations,atrophy and i worry that they are missing something ,saying that my last EMG was the most thorough one i have had , tested left foot,calf,thigh ,Left hand ,arm and also biceps left and right ,thank you for your words as always .

    Best wishes


  2. #12
    Forum Member
    Join Date
    Oct 2018
    Went for second opinion on Wednesday. Very experienced neurologist who is director of local MND care centre, runs weekly MND clinic, diagnosed and treated lots of cases.

    Took down full medical history. Checked reflexes of limbs - nothing remarkable as far as I could tell. Passed the usual strength tests for clinical weakness. 6 months ago I could run 5 miles but I'm now congratulated for standing on tip-toes for a few seconds. Can still walk a few km slowly on the flat.

    He had a look for fasciculations. As usual they start to behave the minute you strip off for the doc.

    Had a look at muscle wasting. He agreed there was wasting but it didn't look like "neurological wasting".

    We reviewed the EMG test from 3 weeks ago. A couple of muscles had "under recruitment" but nothing else of note.

    He diagnosed "functional disorder":

    The software in the brain is working incorrectly to cause these symptoms rather than any underlying physical disease. I offered to pay for a barium swallow test to prove that I was having trouble eating. He said it wouldn't change the diagnosis no matter what it revealed.

    Some maths for those that like this kind of thing...
    Some 15% of cases seen by neurologists end up with no underlying physical cause. The following symptoms have occurred in the following order:

    neck pain, profound leg weakness, fasciculations, breathing problems, weak bowels, swallowing, chewing, arm weakness

    Assuming these to be independent and assuming the likelihood of finding yourself in a neurologist's office in the first place to be 1 in 100, then that makes me very roughly one in a billion.

    How special am I? A rhetorical question but this is a public forum so any and all responses welcome.

    Thanks for reading and for all previous messages of support and hope.


  3. #13
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Phil,

    I hope you are finally reassured now that you don't have an MND and it must be a relief to get a diagnosis of FND, which isn't life threatening and can respond well to treatment, especially CBT - I hope you've been referred on for treatment.

    Yes, this is a public Forum, but it's for people who are living with, or have been affected by, an MND - part 1 of Forum Rules. There is an FND Forum which would offer you the support you need, as members would have first hand experience & knowledge of what FND is - we don't and you need to talk to others who share your diagnosis.

    Sincere best wishes for a full recovery.


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