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Thread: Some advice please

  1. #1

    Some advice please

    Hi, please could I ask for some advice.

    I am a 37 year old female and have numerous symptoms which I think could indicate MND. I have seen a neurologist and have had some tests including an EMG which was normal and other tests which have ruled out myasthenia gravis.

    My symptoms are confined to my upper body. I have a problem with my neck muscles being very weak making it difficult for me to hold my head up. Muscles in my back and chest feel tight. My chest muscles ache and I struggle to take a deep breath. I have muscle twitching all over and have lost weight from my chest area, arms and legs. In the last week my tongue has started to feel swollen, aches and I feel it's catching on my teeth...very odd. My arms, legs and hands work ok although right hand seems slightly weaker.

    I am concerned that the neurologist can't tell me what is wrong with me or how to get better.

    From what I have read MND presents differently in different people but I wondered if anyone had experienced similar symptoms at an early stage?

    I have 2 young children and am really hoping this isn't MND but don't we all........

    Thankyou for reading and any advice is appreciated.

  2. #2
    Forum Member JAY TEE's Avatar
    Join Date
    Apr 2014
    Halesowen, West Midlands
    Diamond, sorry about your symptoms hope it isn’t brain tumour cancer in brain. The MND can be with you for a while before a formal diagnosis.
    I was formally diagnosed 5yrs ago. Before that I had pain in my left hip and was tripping a few times. I now cannot walk and talk. But my MND is still down my left side and I have severe drooling from mouth. I can still manage eat up chopped mashed food and my breathing still good. Best wishes John

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Diamond and welcome to the forum;

    I'am no specialist but I don't think I've hear of Mnd progressing in that way at the start but they can progress to affect them areas.

    I would pester your neurologist for answers and \I hope you don't become a permanent member here.

    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.

  4. #4
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Greater Manchester
    Hi Diamond and welcome to the forum.

    I can't really make any useful comments about your symptoms but I sincerely hope that you don't have MND. I also hope that the doctors soon manage to establish what is happening to you and are able to treat whatever it is, effectively.

    Trying to keep positive, but not always managing.

  5. #5
    Forum Member
    Join Date
    May 2018
    Hi Diamond 123 and welcome to our friendly forum, it's a great place for advice and support.

    I am so sorry you are worried about your symptoms. Waiting for the results of tests and then to see consultants is so stressful and uncertain.

    I am sure there will be others on here to give you more knowledgeable advice than me because there are folks on here who have lived with the condition for many years.

    I had lots of tests for walking difficulties but MND was only confirmed after an EMG so it's good that yours was clear.

    Fingers crossed for you that you get some answers soon and it's not MND,
    Love Debbie x

  6. #6
    Thankyou so much for taking the time to read and comment.

    I think I need to keep badgering my neurologist. I have paid privately for these tests so all the more frustrating I have no definitive answers.

    My boys are just 2 and 6 and I cannot bear the thought of what a diagnosis of MND would mean for them.


  7. #7
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Diamond,

    Your symptoms sound nothing like MND symptoms - I can't really see where the possibility of it being an MND came from.

    I hope you soon find out what is causing your symptoms and, if you haven't already had an MRI, that would be an important diagnostic test to have.

    Given you're seeing a private neurologist, you can always change to a new one if you don't feel you're getting answers. Did your GP refer you to an NHS neurologist too (even if there's a waiting list!) and did the GP focus solely on it being a neurological issue?

    Best wishes with your health,

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

  8. #8
    Thankyou for your response and advice Ellie. I think it's strange the neurologist hasn't recommended an MRI. I will definitely ask him about this. I was referred to NHS neurology too but waiting time was 5 months! I am going to chase this. There has never been the suggestion that this is anything other than a neurological issue.

    I appreciate my symptoms are somewhat unusual, but after doing some extensive online research (dangerous, I know) I really can't see anything else that fits my symptoms. It's the combination of head drop, muscle twitching and weight loss that is concerning me most.


  9. #9
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    It's really important to have an MRI which will check for spinal compressions etc. and I am very surprised one wasn't done, given your symptoms. Did you have nerve conduction studies (NCS) as well as an EMG?

    You would not have had a clean EMG if your weak neck was due to ALS/MND - by the time a person with ALS has head droop, a huge proportion of motor neurons would be destroyed and the EMG would be highly abnormal.

    Again, you're not describing MND symptoms. What's the next step with your neurologist?

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

  10. #10
    I just had the EMG not NCS. My neck muscles were not tested with the EMG. The closest needle was on my shoulder. I actually saw a different neurologist in March and he thought I had dystonia so I had some Botox injected into my neck. The botox made no difference and given my other symptoms, I wanted a second opinion hence the recent tests. Botox can stay in the body for 3 months so it's possible this could have affected the EMG result.

    I am now waiting for the neurologist to call me. As far as he is concerned all tests have come back ok and hes happy nothing is wrong. I know something is wrong with me and I need to know what the next steps are to a diagnosis.

    I am really struggling doing basic things at home and looking after the kids is starting to get difficult. I feel like my body is fighting against me and I just need some answers. I'm not very patient at the best of times but this is really testing me!!

    Appreciate your advice. X

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