Recent content by Ginger83

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    Durogesic fentanyl patch and Abstral

    Does anyone use or have any experience with either of these meds? I am trying them for shoulder pain but convinced that they are making me worse.
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    Anxiety and panic attacks while using NIV

    Thanks KimT. I just do not feel confident wearing the mask using the niv and I panic. Sometimes I am fine for two hours and other times I need it off after two minutes. Have you ever seen this before?
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    Anxiety and panic attacks while using NIV

    How did you find the niv? Did you have any anxiety?
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    Anxiety and panic attacks while using NIV

    That's very true. Hey I've just spotted you got your diagnosis at the same time as me. Well done on surviving so long.
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    Anxiety and panic attacks while using NIV

    Hi do you ever feel the need to take the mask off?
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    Anxiety and panic attacks while using NIV

    I use NIV, a Nippy 3+ a few hours every day. If someone is nearby I'm fine but when I'm alone I get anxious and panic to the point that I want the mask off but I'm unable to as I can't use my arms. Has anyone experienced this?
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    Male random uncontrollable ejaculation problem

    Hi thanks for your reply. Can I ask what do you mean?
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    Male random uncontrollable ejaculation problem

    I received my diagnosis in a motor neurone clinic in Beaumont hospital in Dublin, Ireland back in 2015. I didn't get a second opinion. As the disease progressed it was very definitely motor neurone disease. I don't go to the clinic too often.
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    Male random uncontrollable ejaculation problem

    Hi rao. Does it happen often for you?
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    Male random uncontrollable ejaculation problem

    I'm not sure what information you want, most of my details are under my username. I was diagnosed in Beaumont, Dublin.
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    Male random uncontrollable ejaculation problem

    Hi thanks for your reply. I am in Ireland and have motor neurone/als a number of years. I wanted to see if other PALS had experienced this issue. Why would I keep it to myself? It's a genuine problem that I'm not ashamed of. I hope you are doing well.
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    Male random uncontrollable ejaculation problem

    Has anyone heard of this before?
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    Male random uncontrollable ejaculation problem

    Hi I wondered if anyone has seen this issue with ALS. I am having random uncontrollable ejaculation episodes mostly at night when I am asleep. It would wake me at random times and I don't know why.
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    Did anyone notice a point when their relationship changed?

    What about abuse? Has there ever been verbal abuse as in the caregiver being resentful at times having to provide care?
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    Did anyone notice a point when their relationship changed?

    I'm a married man with ALS 7 years now. I'd like to know if anyone noticed a point in your journey when your relationship changed from being husband and wife to just patient and carer?
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