Announcement

Collapse
No announcement yet.

Worried I have MND.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Graham
    replied
    Exactly Matt. MND gives you plenty of notice so that you can have good time until the grind sets in. Even then, life is fulfilling with excellent care.

    Leave a comment:


  • matthew55
    replied
    Everyone dies, it's like taxes. 😉x

    Leave a comment:


  • Lou2020
    replied
    Wow, this makes me extremely anxious. I thought given the EMG showed no signs of MND or any other problem I could be sure I was ok

    Leave a comment:


  • Graham
    replied
    Maybe you have a MND gene that your grandparent had. Firstly you need to be gene tested.

    MND is highly complex.

    Leave a comment:


  • Lou2020
    replied
    Graham,

    you say it is of great concern, is that based on my symptoms and the photo I have posted?

    given I’ve had two normal EMG’s is that not reassuring?

    Leave a comment:


  • Graham
    replied
    The fact that MND is in the family is of great concern.

    You should ask/demand a whole genome test. This will give you the answers that you are looking for. It will serve you well to do some research yourself. Most neurologists are 'job's worth's' and you have to elevate their knowledge in this rapidly moving field.

    Please don't be intimidated by contributors on here.

    Leave a comment:


  • Lou2020
    replied
    Doug, thank you.

    I am concerned I have muscle wasting in my right leg, please see attached.

    Given I’ve had a clean EMG in June, can this rule out MND?

    thank you for your response.

    Leave a comment:


  • Doug Carpenter
    replied
    Lou

    As people here have said and your neurologists have told you on the basis of your EMGs, it sounds highly unlikely that you have MND.

    However, several of your symptoms, e.g. tingling in your limbs, feelings of weakness, fatigue and perceived speech slurring are of course symptoms of Chiari malformation. You should discuss these with the medics dealing with that diagnosis.

    You are clearly suffering from severe health anxiety. This in itself is debilitating and can bring on various physical symptoms. Please ask your GP for help or a referral for this.

    Best of luck.

    Doug

    Leave a comment:


  • Lou2020
    replied
    My leg feels stiff, heavy, all my limbs do actually, especially my right leg and foot and my right hand and wrist.

    I’m worried that what I am experiencing in my throat/mouth and tongue is because it’s spread. I feel like I am slurring, however no one else around me has mentioned it. I have extra saliva constantly now too.

    my right foot tingles constantly and feels weak.

    I’m worried that I’ve not had a clinical since January, therefore having an EMG in June that was normal can’t rule it out.

    I have one leg that looks visibly smaller, my calf muscle is like mush and I have pain in the calf likes it’s tearing, I can’t straight my leg out properly because it hurts. i had CK blood test but it was normal.

    I also have a grinding, tingling and twitching in my left shoulder too.

    Leave a comment:


  • Ellie
    replied
    IF you had muscle atrophy caused by motor neurons dying, then the EMG would have picked that up, also you would have noticeable loss of function by that stage.

    Tingling, burning, pain, "odd" feeling body parts all point away from MND.

    Please believe your Neurologist.

    Leave a comment:


  • Lou2020
    replied
    Hi Ellie

    i only had a clinical in January in relation to the chiari Malformation. He discharged me from his care in January 2020.

    Symptoms have changed and got worse since May 2020, then I had an EMG in June 2020. I haven’t had a clinical exam since January.

    as I said, would the cause of muscle wasting show on the EMG I had in June?

    and do my symptoms sound suggestive of MND?

    thank you for your response.



    Leave a comment:


  • Ellie
    replied
    ALS/MND is not diagnosed on the basis of an EMG alone, but after thorough clinical testing and a whole range of diagnostic tests.

    You have had 2 normal EMGs and Neurologists found nothing in either EMG nor your clinical exams suggestive of an MND.

    Take that and be grateful.

    Leave a comment:


  • Lou2020
    replied
    Ellie, thank you for your response.

    Is a normal EMG, enough to rule out MND? If there is muscle wasting due to MND would an EMG pick it up?

    Appreciate any further response.

    Leave a comment:


  • Lou2020
    replied
    Olivia, thank you for your response it’s very much appreciated.

    The EMG I had in February 2020 was only done on my left leg in my calf and thigh. Would that be enough to detect issues?

    However in June 2020, my right leg, left arm, middle back and under chin was tested.

    If there is muscle wasting due to MND, would something have come up on the EMG even in early stages?

    much appreciate your response.

    Leave a comment:


  • Ellie
    replied
    Sorry about your grandmother.

    Originally posted by Lou2020 View Post
    ... the neurologist wrote to me to say the EMG showed no signs of MND or any other problem..
    That should reassure you.

    If you are due to see your Dr about your Chiari 1, you should discuss your symptoms with him or her. If you don't have an upcoming appointment, I guess you should make one.

    If you need help with your anxiety, seek help for it.

    Love Ellie.

    Leave a comment:

Working...
X