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Thread: So scared-Advice much appreciated

  1. #1
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    So scared-Advice much appreciated

    Hi All,
    I have been following this forum for a number of months and am so desperate for answers at this stage that I would greatly appreciate any advice that anyone can offer.

    I first started experiencing weakness in my right leg and both arms in Sept 19. This spread to my other leg in October at which stage I noticed a difference in my speech that is not noticeable to anyone else and in fairness is only with certain words, for example prescription. Rather than a slur, it sounds like I am talking through my teeth. I also had developed muscle twitches in all limbs and in my back. I went to my GP who organised a referral to neurologist at a private hospital and this consultation took place in early November.

    The neurologist carried out a very cursory examination which she said was normal but would organise an MRI of my brain and spine. I had done a lot of research before my appointment and due to the twitches etc I asked her straight out if I could have MND and she replied absolutely no way.

    My MRI came back clear and a follow up appointment was arranged, only because of my insistence. She carried out another examination and agreed to perform an EMG but again, only because I really pushed it.

    I had the EMG in mid December including a NCS. She only tested my right arm and leg and said that if anything showed there, she would test other areas. It didn't so only the 2 limbs were tested, despite the fact that I find my left leg now much weaker. At this stage, she mentioned that fibromyalgia might be a possibility but that I should try mindfulness and exercise! She was leaving the hospital and the area that week and had absolutely no interest in offering any other solution.

    At this stage, I feel I have progressed a lot. Both my arms are increasingly weak. I have a 3 year old who I can just manage to lift but cannot hold for any length of time. My legs are also increasingly weak, I cannot stand in one spot for any length and I have to use my arms to pull myself up the stairs. I also have difficulty getting up off the floor.

    The most frightening symptom is that I am now having breathing issues. I have an ongoing chest infection for almost a month and have had 3 antibiotics, steroids and have been given a nebuliser but I am still wheezing, coughing and feel very short of breath.

    In general, I have extreme fatigue and day to day life is becoming more difficult. I also have very painful cramps all over my body.

    I suppose my main question is in relation to my EMG, does the fact that it was normal completely rule out MND? As far as I can see, that is unfortunately what all my symtoms point to but am just wondering if more areas of my body would need to have been tested for it to show up.

    I really hope that me posing this question and telling my story does not offend anyone, I am just a relatively young mother who is desperate for answers and would be very grateful for any advice that can be offered.

  2. #2
    Forum Member Ellie's Avatar
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    Hi Sesa,

    Because there is no single test to diagnose MND, the diagnosis is only made if there is clear evidence of clinical weakness in association with other clinically evaluated symptoms and specifically abnormal findings on an EMG and having ruled out all other reasons for one's symptoms.

    To answer your question: having a normal EMG and not having clinical weakness, which the Neurologist did not find, suggests something else is responsible for your symptoms.

    I wish you the very best in getting solutions - keep working with your doctor(s) and look after your day-to-day health, especially sleep, hydration & what you eat.

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

  3. #3
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    Hi Ellie,

    Thank you so much for taking the time to reply to me.
    I think the only way that I am going to get to the root of what is going on is to try and get a second opinion....easier said than done as I live in a very rural area with all major hospitals and the nearest neurologist being 4 hours away!
    I do try and take comfort from the fact that the EMG was normal but am also aware that such a small selection of muscles were tested.

    Thanks again,

    Sesa

  4. #4
    Forum Member Ellie's Avatar
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    There is no issue re the fact 'only' 2 limbs were tested - both limbs were symptomatic and would have shown abnormalties. In fact one limb would have been enough to test, but the Neurophysiologist was thorough, which was good.

    By all means, get a 2nd opinion - a 4 hour journey, though a pain in the rear, would be well worth it if it puts your mind at rest and gives you answers.

    Good luck.

    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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