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Thread: Awaiting diagnosis

  1. #11
    Forum Member Lynne K's Avatar
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    Hi Daniel. Welcome to our forum. Sorry about your symptoms. You must be very worried like all of us were at a similar time. I'm too tired to type much as just got home from a music concert. I'll write more tomorrow. 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.

  2. #12
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    Quote Originally Posted by Lynne K View Post
    Hi Daniel. Welcome to our forum. Sorry about your symptoms. You must be very worried like all of us were at a similar time. I'm too tired to type much as just got home from a music concert. I'll write more tomorrow. Take care. Lynne
    Thank you for your message. Hope you enjoyed your concert!

    Daniel

  3. #13
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    Hi Daniel,

    I strongly agree with Dis1960 about voice banking. My mum was diagnosed with MND - Progressive Bulbar Palsy in July last year, she started slurring her words back in March, by Christmas she had barely any words. She has good days where we can understand a word or two but mainly we can’t make any words out. I miss my mums voice. I cannot remember what she sounds like.

    The wait is awful. I pray that it’s not MND but if it is, the MNDA are wonderful, they’ve made mums diagnosis so much easier.

    Fingers crossed. Ali.

  4. #14
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    Hello Daniel, sorry you find yourself on this forum, hopefully they will diagnose something else, I will keep my fingers crossed, Iím the Mum my daughter was diagnosed Sept 17 a couple of months after having her second baby and had an 8 yr old daughter so I appreciate what you must be feeling.

  5. #15
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    Hi Daniel and a warm welcome to our forum,

    I am so sorry you are experiencing worrying symptoms: having tests is so stressful and the waiting for results and then further tests seems endless.

    It sounds like you have lots of loving support around you so try and take one day at a time, I know that's easier said than done. I have my fingers crossed that it turns out to be something else because there are lots of conditions that mimic MND .

    Take Care of yourself and keep in touch,
    Love Debbie x

  6. #16
    Forum Member nunhead_man's Avatar
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    Hello Daniel,

    May I add my welcome and my good wishes?

    I can quite understand it is a worrying time, but as has been said above, do take things one step at a time.

    Have you been put in touch with anybody in MND Association locally to you?

    It may be there is a visitor who might be able to help you through the process of deciding if you have MND?

    You mention muscle weakness and fasiculation (shivering) , but I wonder if you have one of the other obvious signs with the weakness in your arms being the loss of the grip between your forefinger and thumb?

    That was the 1st thing I noticed and led to my diagnosis through the stages mentioned above (MRI, scan, lumbar puncture, electrical test).

    As others have said, do not hesitate to ask questions here

    Best

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  7. #17
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    Quote Originally Posted by Jaxx View Post
    Hello Daniel, sorry you find yourself on this forum, hopefully they will diagnose something else, I will keep my fingers crossed, I’m the Mum my daughter was diagnosed Sept 17 a couple of months after having her second baby and had an 8 yr old daughter so I appreciate what you must be feeling.
    Thank you for reply and what sad news about your daughter and the effects on your family. How do you manage. I am constantly in bits when I think of the potential implications on my daughter. Like you say a similar age to your eldest grand child. You must have had to be so strong to support them all x

    Daniel

  8. #18
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    Quote Originally Posted by nunhead_man View Post
    Hello Daniel,

    May I add my welcome and my good wishes?

    I can quite understand it is a worrying time, but as has been said above, do take things one step at a time.

    Have you been put in touch with anybody in MND Association locally to you?

    It may be there is a visitor who might be able to help you through the process of deciding if you have MND?

    You mention muscle weakness and fasiculation (shivering) , but I wonder if you have one of the other obvious signs with the weakness in your arms being the loss of the grip between your forefinger and thumb?

    That was the 1st thing I noticed and led to my diagnosis through the stages mentioned above (MRI, scan, lumbar puncture, electrical test).

    As others have said, do not hesitate to ask questions here

    Best

    Andy
    Andy thank you for your reply. I have the weakness between my forefinger and thumb on both hands. My symptoms are progressing they may be more obvious to the consultant when he reviews my MRI.

    Daniel

  9. #19
    Forum Member Ellie's Avatar
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    Hi Daniel,

    I'm sorry you are so anxious about your symptoms. I think MND is way down the list of possibilities of what is causing your weak feeling muscles. ALS/MND doesn't present as you describe.

    What clinical tests did the Neurologist carry out during your visit and what feedback did he give you?

    Your job in the ambulance service must be very stressful and physical too if you're frontline ambulance staff.

    I hope the MRI can identify what is causing you to feel your muscles are weak - with MND muscles don't feel any different, they just don't work, so it's good that you haven't described muscles failing.

    I wish you all the best and hope you don't have to wait long for your MRI appt.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  10. #20
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    Quote Originally Posted by Ellie View Post
    Hi Daniel,

    I'm sorry you are so anxious about your symptoms. I think MND is way down the list of possibilities of what is causing your weak feeling muscles. ALS/MND doesn't present as you describe.

    What clinical tests did the Neurologist carry out during your visit and what feedback did he give you?

    Your job in the ambulance service must be very stressful and physical too if you're frontline ambulance staff.

    I hope the MRI can identify what is causing you to feel your muscles are weak - with MND muscles don't feel any different, they just don't work, so it's good that you haven't described muscles failing.

    I wish you all the best and hope you don't have to wait long for your MRI appt.

    Love Ellie.
    Thank you Ellie,

    I do work front line but am off at the moment due to my neurology assessments. It can be stressful. I have done it for nearly 16 years. There are always the jobs that effect you and often the ones that most people wouldn't expect.

    Daniel

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