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    Worried

    I apologise in advance for the following ramble.

    ​​​​​​I am a 30 year old male. Late in August I began noticing twitching (including rippling) in my right calf which soon spread. I now have them in my trunk, stomach, arms, shoulders and even my left eye. At onset I felt subjective weakness in some limbs especially my left hand but there wasn't any failure.

    I began seeing a consultant neurologist in the middle of September who is an expert in ALS. My clinical examination was entirely normal (it included strength and reflex tests) but to reassure me he sent me for EMGs of my legs, arms, and neck/tongue. These were all clear and the consultant told me I have BFS. I am genuinely reassured regarding my limbs and bulbar area. However I have now become concerned about respiratory onset ALS. Whilst I know this is incredibly rare and I would be unusually young I gather that widespread twitching can be a symptom. I have also been conscious of changes in my breathing and speaking in recent weeks. It is true that I can still do long, pacy walks every day (typically cover 3.5 miles in 45 minutes at lunchtime) without needing to stop or without feeling breathless. However I struggle to speak without wheezing and while I am not terrible lying completely flat on my back there does seem to be a difference and my face can look somewhat flushed after 30 minutes of it. My cough also sounds a bit weaker in my view. My voice sounds different too at least to my ears- lower and a bit raspier. That said I'm not yet having sleep issues or problems on waking with drowsiness etc and there's still quite a lot of power in my voice but I suppose it is early days. I discussed all this with my consultant but he was not concerned and has not referred me for a diaphragm EMG which is fair enough. Kindly he has also agreed to see me every now and then. Nonetheless I am still terribly worried and I am now trying to get a referral for a lung function test which I gather can be a good predictor of respiratory strength when done in a supine position. I was wondering if others think that is the right approach- I feel so scared especially in the current climate and don't know where to turn. I do apologise if I am wasting anyone's time and I do not intend to disrespect those who have been diagnosed.

    #2
    Just to let you know MND Connect are offline until Monday morning - you could phone them this evening, see the MND Connect tab for details.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi Guy1990

      I'm sorry that you are concerned that you might have MND. You say yourself that you have seen an expert in MND who isn't concerned about your symptoms and diagnosed Benign Fasiculation Syndrome (BFS). I think it is really important that this is what you focus on. If there were any concerns that you had respiratory-onset MND then this would have been picked up by the neurologist. Respiratory-onset MND is uncommon and when someone has respiratory-onset MND, it tends to progress very rapidly and the symptoms are often quite severe when they start to cause concern. People with respiratory-onset MND will often go undiagnosed until they have a medical emergency such as respiratory failure and are admitted to A&E.

      It would be very unlikely that someone with respiratory-onset MND would be able to walk 3.5 miles at all.

      I really think that you need to listen to your neurologist and be reassured by what they have told you. If they haven't suggested a lung function test then their clinical judgement is that you don't need one and this is reassuring.

      If you'd like to discuss this further then please do contact us on 0808 802 6262. We're available Monday-Friday 9am-5pm.

      Best Wishes

      Rachel
      MND Connect Adviser
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]

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        #4
        MNDConnect Rachel, is your Helpline not operating in the evenings at the moment?

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

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          #5
          Hi Ellie

          Yes our evening helpline is open Monday-Fridays 7pm-10:30pm. However, the evening helpline is more aimed at providing emotional support to people living with MND and their families. If someone wants to discuss their concerns about symptoms then it would be best for them to ring the helpline during the day.

          Best Wishes

          Rachel
          MND Connect
          Contact us on 0808 802 6262 or at [email protected]

          Comment


            #6
            Oh, I didn't know that, but I do now, and duly noted!!

            Thanks for letting me know, Rachel.

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

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