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Thread: Advice needed

  1. #1
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    Advice needed

    Hi everyone, my name is Josh and Iím 26 years old. In December 2019 my grandad was diagnosed with mnd. Needless to say this was a very stressful time for me and my family. Naturally I started to have concerns whether or not this meant myself or other family members could get mnd. A week later I noticed my calves twitching which over 6 weeks spread to my feet. I started to panic and within 2 months the twitching had spread to a number of parts in my body. I saw a neurologist privately who did a physical examination and conducted an emg. The emg came back clear and my diagnosis was benign fasciculations and nerve hyper excitability caused by stress. I was reassured given my grandadís age (75) and lack of family history of the illness, it is highly unlikely I would inherit a form of mnd. Iíve had these muscle twitches for 5 months, they have become very widespread and constant and after light exercise my calves twitch like crazy. I do not have any weakness or any cramping. Iím hoping to see another neurologist next week but would welcome any advice from anyone here.

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Josh, welcome to our forums. I’m sorry about your grandad’s diagnosis. It is a big worry for family and friends. I hope that your granddad has all the help and support that he needs.

    I’m sorry that I can’t say much about your own symptoms. I’ve never come across stress related ’fasciculations’ It must be driving you mad. Keeping in touch with a neurologist sounds good. I hope that you get back to your normal state before too long. 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.

  3. #3
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    Welcome John. Hopefully you will get reassurance that you haven’t got MND. In the meantime perhaps your grandad might be interested in this forum?

  4. #4
    Forum Member Ellie's Avatar
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    Sorry to hear of your Grandad’s MND diagnosis Josh.

    As you say, it is perfectly natural for you to worry about getting the same condition, just as you would if he had a diagnosis of cancer, Parkinson’s, kidney failure etc. You’re being hypervigilant now and will notice every tiny twitch when the reality is that everybody twitches. Make sure you’re well hydrated, have good quality sleep, don’t take too much caffeine and be kind to yourself!

    Twitches can indeed be linked to stress but I’m glad you got yourself checked out by a neurologist, who found no abnormalities, and you even had an EMG, which was normal. That you weren't reassured by getting the all clear from a Neurologist points to anxety - please don't let that insidious anxiety take over your young life...

    Is the next Neurologist also private and what do you hope to achieve from the visit?

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

  5. #5
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    Hi everyone, thanks for your replies.

    Hi Ellie, itís a private appointment as nhs wonít refer me on the basis I have no weakness at the moment. My twitching has increased/intensified which is why I am seeking another opinion.

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