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Thread: Not diagnosed but concerned

  1. #21
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    Quote Originally Posted by jonboy53 View Post
    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?
    Well I just haven't felt right and into my 3rd year of this now , I have got stenosis of Lumbar and also Degenrative disc disease top to bottom and based on my EMG (private) that I had done in August last year said pointed to Radiculopathy but its the muscle loss that concerns me as had legs like tree trunks (not now)

    Gibb completely dismissed me out of court and diagnosed me with FND!!! -he had his thoughts you might have MND then .

    Can I ask where you are symptoms wise now -are you still mobile ,loss of use of anything?

    Not really noticed to be truthful although it does seem to get cloudy at times?

  2. #22
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    You are welcome to come and see us - I canít walk now and stuck in bed. Right leg is virtually finished.

    Dark urine indicates the muscles being pissed away - muscle wasting byproducts.

  3. #23
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    I was told on timescales by MND association that something should have failed by now based on twitching 22 months , did you have pain as a presenting symptom and what was your first symptom.

    Will monitor my urine now and see

  4. #24
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    Where do you live?

  5. #25
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    It sounds like you have dismissed radiculopathy - because you would have numbness/loss of sensation on your left side and no fasciculations

  6. #26
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    secret
    Last edited by jonboy53; 7th March 2019 at 11:57.

  7. #27
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    very first smptoms were fatigue and back ache

  8. #28
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    I have sent you my phone number in a PM

  9. #29
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    I am seeing Neurologist two weeks Monday that I initially saw Privately -got to travel to Shoreham but seeing him under NHS ,got my GP to do a referral to my local hospital and got letter this morning to say that they have declined referral - going round and round in circles , You say your symptoms were right sided ,when did you first notice muscle loss?

  10. #30
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    in the summer of 2017 - I used to have huge rugby players legs

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