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Thread: Advise re symptoms pls

  1. #1
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    Advise re symptoms pls

    Hi
    I am new to the forum and canít say itís a club I want to be part of but I suppose everyone feels the same.
    I was given a diagnosis October 19. I started to twitch in June 19 and this has spread everywhere except on my face. After numerous tests I was given a probable diagnosis and saw my neurologist again in January who says there is nothing else this can be but I donít fully meet the diagnostic criteria so canít give me formal diagnosis.
    I twitch all the time and also feel very shaky. My hands visibly shake and my legs and back shake when standing up but this isnít visible. I feel like Iím wired up and get vibrating feeling in my arms, shoulders and legs. I still work and can still do everything normally although feel things are an effort. I also get a lot of burning/prickling sensations.
    I just wondered if anyone else has these symptoms and if so do you take any medication to reduce the symptoms?
    Thanks

  2. #2
    Forum Member Ellie's Avatar
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    When you say you got a "probable" diagnosis, Tot, what was it exactly - probale what?

    Some of your symptoms are not ALS/MND symptoms and twitching can be benign or point to a host of other underlying causes, so it would be helpful to know what other symptoms, if any, you have and also which tests you have had.

    Take care.

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

  3. #3
    Forum Member Lynne K's Avatar
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    Hi Tot, sorry that I canít answer your question but wanted to wish you well about getting a definitive diagnosis soon. Have you been referred for tests? The usual ones that help with getting a diagnosis are: muscle and nerve conduction tests; an MRI of your brain and sometimes a lumber puncture. I had the first two of these but not the third. Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
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    Quote Originally Posted by Lynne K View Post
    Hi Tot, sorry that I canít answer your question but wanted to wish you well about getting a definitive diagnosis soon. Have you been referred for tests? The usual ones that help with getting a diagnosis are: muscle and nerve conduction tests; an MRI of your brain and sometimes a lumber puncture. I had the first two of these but not the third. Take care, Lynne
    I have had 3 emgs/nerve tests, brain and spine scan with and without contrast, lumbar puncture and a whole load of blood tests. My only symptoms to date are what I have listed above. Neurologist says I have als but as I donít fully meet the diagnostic criteria he cannot give formal diagnosis at this time. I was started on riluzole back in October.

  5. #5
    Forum Member Terry's Avatar
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    Hi tot and welcome to the forum,

    Your symptoms don't match the normal patterns of Mnd but a neurologist would not start you on riluzole if they were in doubt.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #6
    Forum Member Ellie's Avatar
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    Tot, if the Neurologist is not an MND Specialist, you can always get a 2nd opinion at an MND Clinic which might give a clearer picture. I'm sorry you are in this "Is it or isn't it?" category.

    The "burning/prickling sensations" you're experiencing don't fit ALS symptoms, which is why a 2nd opinion is suggested - some neurological conditions can be notoriously difficult to get to the bottom of.

    Did you get the results of the 3 EMGs?

    And you don't have any Clinical Weakness?

    Best wishes to you.

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

  7. #7
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    Hello Tot and welcome to the forum although I am sorry you have found yourself on here.

    Although you are obviously hoping there is another explanation having a "probable " diagnosis must make it difficult to move forward. Does it mean you cant get access to the services and benefits we need ? For example, OT, physio,specialist nurse.

    I hope you get some definate answers soon,
    Love Debbie

  8. #8
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    The neurologist who gave me the diagnosis was a specialist and I was referred to him for a second opinion. The first one I saw said 90% it’s wasn’t mnd hence second opinion. I have received a letter with the emg results which contained the words chronic significant and chronic mild a lot. At the point I do not have any clinical weakness.

  9. #9
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    At this time I don’t need any referrals as still completely independent and I work as a social worker so am aware how to refer when needed.
    Thanks to all of you for taking the time to respond to me. Much appreciated x

  10. #10
    Forum Member Ellie's Avatar
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    Hi Tot,

    In assocaiation with clinical findings, the findings of note regarding an EMG test for ALS/MND are :
    Evidence of chronic neurogenic change.
    Evidence of acute denervation.

    Do you mind me asking if your Neurologist is part of an MND Clinic (if you’re in the UK or Ireland)

    I really, really hope there is some other cause for your condition but if it turns out to be an MND, your professional background should hopefully be of help to you in navigating the services.

    Take care.

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

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