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Atypical onset. Six months on.

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    Atypical onset. Six months on.

    I believe I am suffering from an onset pattern that is very rare. It has started from shoulders, then spread to theneck, back, abdomen, hips, thighs. In jargon it would be known as truncal, abdominal, (axial) onset. I am putting on weight as the exercises don't have the same affect. There is distinct launch which is abdominal protrudence (loss of muscle tone) and there is weakening back muscles Which is lordosis. Now I am Beginning to feel that the skin around the chest is becoming translucent and veins are more visible. The shoulders are stiff. Left ankle and heel are painfull. I wondered if anyone on the forum has had a similar onset? EMG s showed changes within normal limits. 3 Neuros are saying it is not MND/ALS. That was almost 3-4 months ago. MRI of the spine and thighs (to check denervation) is clean. The continuous internal vibration/ tremor in performing usual activities, bending down, lifting and holding shopping. Makes me feel this is either oncoming muscle fatigue or loss of co-ordination. Sorry for the long post.

    #2
    Hi fugitive and welcome to the forum,

    Sorry to hear about your serious problems.

    I have never heard of these symptoms being the start of Mnd before, so I guess that you will be a fugitive for a little while longer.

    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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      #3
      Good luck with finding an appropriate diagnosis and treatment that will help. 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.

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        #4
        Nothing like a good laugh. Terry. Thanks for your time. I eat less than before. Have less skin secretions and sweating. The rarity is the first mud led to give way are the shoulder. Now they vibrate/ are tremulous.

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