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Bulbar Onset MND Sufferers

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    Bulbar Onset MND Sufferers

    Hello. I was diagnosed with bular onset MND in June 2017, since then the MND has got worse but only affects my mouth region, particularly my speech now is very poor. I believe I may be getting lower limb symptons, but nothing tangible, just tired muscles after excercise, slow reactions when I play sport, a bit of muscle twitching. I would be interested to hear what anyone, who had bulbar onset MND, experienced when it first spread to their limbs. Are there any tests I can do to see if it is spreading?
    Thanks, Paul

    #2
    Hi Paul and a warm welcome to the Forum.

    Did your Neurologist ever give you an MND subset - e.g. ALS, PLS, PBP, IBP (amyotrophic lateral sclerosis, primary lateral sclerosis, pseudobulbar palsy, isolated bulbar palsy) which, though still broad terms, would give you some idea of what you're dealing with.

    At your next Clinic appointment, get a full examination and the Neuro will know if there are signs of upper motor neuron and/or lower motor neuron involvement (UMN, LMN). If needed, you may be asked to do an EMG test to see if there is LMN involvement in your limbs, which would signify progression.

    I was not bulbar onset but I'm afraid ther is no set timeframe for when, or if, limbs become symptomatic. At 3 years post diagnosis to be doing as well as you are is remarkable, although I know that is quite a subjective statement as you, like the rest of us, wish you'd never heard of MND!!!

    Take care.

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

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      #3
      Hi Ellie,
      Thank you for the welcome! I see you were diagnosed in 2007, so well done on getting this far & I see you're very active on this forum. I have ALS subset and will ask my consultant to see if I can get an EMG, thanks for that advice. I find it very frustrating that it's virtually impossible to forecast progression of the disease, but at least for me it appears to be progressing slowly so I'm thankful for that. One day at a time!
      Take care, love, Paul

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        #4
        Hi Paul. Welcome to the forum. I too was diagnosed in 2007. Initially with pseudo bulbar palsy, then MND then after about four years was told it was PLS. My first symptom was slurred speech. It’s difficult to recall what happened when but basically nothing much changed after that although I started having falls after losing my balance. Eventually falling downstairs and ending up in hospital for four weeks with a fractured pelvis! I can still walk short distances at home with a rollator but use an electric wheelchair outdoors. I have minimal twitching. My next change was swallowing problems. Although I had a PEG fitted Several years ago, I can still eat a soft food diet. However, as you are aware, it’s impossible to predict progression and my “journey “ is unique to me and, as you say one day at a time but Do get your OT on board with advice to make you safe - particularly to prevent falls (stair rails, grab handles etc).

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          #5
          Hi Paul,

          I was diagnosed with Bulbar onset in Jan 2019, same issues as you with speech and swallowing, they have progressed since them but I have been physically ok until recently I’ve started noticing that I just feel slightly weaker in arms and legs. I can still actually lift something quite heavy but can’t maintain the lift and feel exhausted afterwards so I’m assuming my muscles might be weakening. Haven’t been able to see my consultant since late last year due to Covid, I have a telephone conference booked this month so am intending to ask if there are any checks to be done?

          Regards

          David R

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            #6
            Hi there, I was diagnosed with Bulbar Onset in May 2020, so interested to read everyone's experiences so far. Gives me a positive spin too, to see those who have had it for a long time and still dealing with it well.

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