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    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
    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

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      #3
      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.

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        #4
        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.
        Dina

        Trying to keep positive, but not always managing.

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          #5
          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

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            #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.

            X

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              #7
              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.

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                #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.


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                  #9
                  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.

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                    #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

                    Comment


                      #11
                      Just re EMG: it doesn't matter that your neck muscles weren't tested. Neuronal damage would be widespread and would be very apparent on the EMG.
                      ​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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                        #12
                        That's reassuring then. Thanks. X

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                          #13
                          Diamond, to rewind - you were diagnosed with dystonia in March, had Botox (in your neck because that's where the dystonia was??) and then developed head droop?

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

                          Comment


                            #14
                            The head drop is caused by a problem with my neck and has always been there. The neurologist I saw in March thought my head drop was caused by dystonia. Muscles mis behaving and pulling my head forwards. I went with this and had the recommended Botox treatment. There was absolutely no benefit but it certainly didn't make the problem worse. Given my other symptoms and the fact Botox didn't work, I started to question if I really do have dystonia hence seeking a second opinion. I have read that head drop can be an early presenting feature in MND although it is rare.

                            Everyday my neck seems worse but this is only half the problem. The muscles in my upper body are so tight when I am standing or walking around making doing everyday things really difficult. My limbs and joints ache. My muscles twitch.... blah blah blah....I feel like a broken record. I just want someone to tell me what's wrong with me.

                            It's a very lonely experience when nobody can know exactly how I'm feeling and it's really scary how very slowly my body seems to be giving up on me and why this is happening I do not know! I'm sure other people must have experienced this.

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                              #15
                              For those of you kind enough to respond to my original post a few months ago, I thought I would update you.

                              I had a brain MRI in July which came back normal.

                              I had another EMG in Sept and this showed myopathy in the left thoracic paraspinal muscles as well as excess motor units in left deloid and bicep. No evidence of nerve involvement as far as I understand.

                              At my request, I was referred to Prof Shaw in Sheffield and she wants me to go into hospital for a day of tests in the new year. She said she doesn't think it's MND due to there not being any nerve involvement and the timescales don't fit with MND (first symptoms noticed Sept 2018).

                              Regardless of this, I continue to deteriorate albeit very slowly. I have been off work since May and bit by bit my old life is slipping away. I struggle to walk very far and can no longer take my children out without help. This has been a year of utter hell not just for me but my family too. I started on an anti depressants in August which have helped me deal with what is happening. I have a head up collar on order and am hoping this helps with my weak neck. I am also on baclofen to help with muscle stiffness in my back although can't say that I've noticed much difference.

                              I'm really hoping to get some answers in the coming year.

                              Happy New Year to everyone and here's hoping for good things in 2020.

                              X

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