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Suspected ALS. Struggling

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    Suspected ALS. Struggling

    Hi everyone,

    a friend directed me to this forum and said it may be a good source of support. I’m a 28 year old male.

    I became unwell in December with some unusual sensations and a general feeling of being unwell. This progressed to paraesthesia, prickling, burning and tingling sensations as well as widespread fasciculations and has led to issues with my bowel as well (the muscles are too weak to force a good movement).

    I am not left with the fasciculations and they are focalised to my hand with 24/7 twitching. There seems to be atrophy in this area and the hand jerks and moves around. The twitches are also very fine and like worms under the skin.

    as well as those fasics, I have widespread fadciculations all over my body in every limb and my tongue. I also have aching in my legs after minimal movement and my jaw is constantly twitching on the left hand side, leading to a lot of discomfort with speech and eating.

    I am awaiting an EMG but I’m sure this is ALS at this stage after doing research. I admire the people in this group who pluck up the courage to continue living. I must admit I’m in a very dark place at present and struggling to see how I can move forward once the diagnosis is confirmed. I recently moved into a new home with my pregnant partner and feel like I’m living a nightmare at present.

    I don’t know what I’m expecting but I just wanted to post my story here. It’s nice to meet you all, although I wish it was under better circumstances

    #2
    Life is like a swamp my friend. Welcome here and you will find support plentiful 😁x

    Comment


      #3
      DaveHutch Who is it that suspects you have ALS - just you or a neurologist?
      ​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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        #4
        The neurologist. The twitching at the moment is telltale as well as the other issues. Bowels, cramping, weakness. It’s non stop. Fatigue as well. I know it’s ALS, nothing else causes this. Having a very hard time coming to terms with it

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          #5
          Originally posted by DaveHutch View Post
          I became unwell in December with some unusual sensations and a general feeling of being unwell. This progressed to paraesthesia, prickling, burning and tingling sensations as well as widespread fasciculations and has led to issues with my bowel as well (the muscles are too weak to force a good movement)
          Odd that a neurologist would think 'ALS' with those sensory (non-motor) symptoms.

          I wish you all the best and hope you get answers.

          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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            #6
            I have read that ALS can present with sensory and bowel issues too. The fasciculations and the nature of them is the giveaway as they are persistent, causing weakness and even effect my tongue

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              #7
              No, not as you describe but I'm not a neurologist. I'm sure your tests will give you answers.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Thanks Ellie. It’s very frightening. The twitching in left hand is getting worse by the day and moves the hand around, it’s difficult to use and cramping very often. Thanks for welcoming me to the forum.I’m trying my best to be strong

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                  #9
                  Mine started in left hand but just unusual weakness like gripping thumb and index finger. Twitching in right bicep 24/7 but not strong enough to move arm or hand just like a tense movement. There is plenty that can mimic MND and until you have had all the tests keep hope. I found that I didn’t believe the diagnosis until my blood showed having creatine kinase (CK). It’s proof that muscles are wasting into the blood is what I was told but correct me if I’m wrong.
                  keep hope Dave 👍🏻

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                    #10
                    Thank you. The twitching in my left thumb is absolutely 24-7 and right through the hand. It’s also cramping and weakness setting in. This week the fatigue is immense. I know it’s MND but trying to hold on so the EMG can confirm. I find this a very hard diagnosis to accept

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                      #11
                      I’m 38 played football golf squash tennis badminton cricket plus other activities like swimming walking up until diagnosis in March 2020. Once a month weekend away with the lads drinking for 12 hours straight, 1 year later I sit in my chair and do nothing. It’s probably a good thing we’re in lockdown so nobody can do anything as I don’t feel I’m missing out. Hopefully it’s something else mate but the love in this forum is something special. Any advice just ask someone in here usually has an answer. 👍🏻

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                        #12
                        I think that is the worst when we’ve been so active(although not as active as you)and then to not being able to do anything 🥺 I feel so lazy 🥴
                        Janette x

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                          #13
                          It’s really devastating, the fasciculations are spreading up my left arm and weakness setting in. I am in a very dark place at the moment and struggling to carry on

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                            #14
                            Dave all I can say is that my husband had loads of twitching going on, legs, chest, stomach and arms - 2 years ago - now he has hardly any at all, he's not in a good position for walking granted but he still has arm strength can still eat,drink,talk as normal its not all doom,

                            best wishes
                            Sue

                            Comment


                              #15
                              Originally posted by DaveHutch View Post
                              It’s really devastating, the fasciculations are spreading up my left arm and weakness setting in. I am in a very dark place at the moment and struggling to carry on
                              Dave I feel for you and urge you to contact your GP now. It seems to me that you need to talk to the GP honestly about how you are feeling mentally.

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