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    Clinic update

    I went to my three monthly clinic appointment this afternoon. The blood taken from my ear to check if my stats oxygen and carbon dioxide (re breathing strength) showed that everything is ok. My weight was up but I was wearing more clothes than last time including my coat. Breath stacking must work .

    My neurologist also confirmed that the appointment that I’ve been given for Wythenshaw in January is for a pre-op discussion and maybe tests, so all good. Xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    That's good news
    Lynne K
    Forum Member
    Lynne K

    Originally posted by Lynne K View Post
    My neurologist also confirmed that the appointment that I’ve been given for Wythenshaw in January is for a pre-op discussion
    When you say "pre-op", is that for the suprapubic catheter? xx
    ​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
      Lynne K
      Forum Member
      Lynne K that's such good news 😘😘
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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        #4
        Thanks Ellie and Linda. Yes Ellie, the pre-op is for the suprapubic catheter and a RIG xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #5
          Originally posted by Lynne K View Post
          the pre-op is for the suprapubic catheter and a RIG
          A twofer 👍👍 That won't be long coming around Lynne. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Yea fingers crossed here Ellie xx
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Hi Lynne
              glad your blood tests were ok and you have your date for supra pubic catheter and RIG.
              So for now you can just enjoy Christmas season.
              Best wishes
              Mary

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                #8
                Thanks Mary but I don’t have a date yet for the procedures. It’s just the pre-op with the lead doctor of the breathing team to talk about the risk of a general anaesthetic in my situation. I was told by the urologist at Salford that I couldn’t have the simplest procedure because of the previous pelvic area operations that I’ve had. They are concerned about coming across tissues from for example my bowel being stuck to other organs making the operation potentially dangerous xx
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  Lynne K
                  Forum Member
                  Lynne K that sounds complicated, hope your January appointment brings good news on that score. xx
                  Diagnosed July 2020, ALS bulbar onset.

                  Comment


                    #10
                    Lynne K
                    Forum Member
                    Lynne K
                    When I went for the PEG last June it didn’t go ahead as I had polyps in stomach.So I had an MRI and a RIG procedure …same outcome but different procedure.
                    Hope all goes well at your pre op assessment,
                    Best wishes
                    Mary

                    Comment


                      #11
                      Thanks Mary. I hope that they scan my stomach so that they know that it’s safe to a PEG without open surgery. That’s the big risk xx
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                      I'm staying positive and taking each day as it comes.

                      Comment


                        #12
                        Thanks Heather xx
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #13
                          You're in the best hands in the world at Salford. 🌍👐❤️😍xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            Thanks Mathew. Wythenshaw Breathing Specialists lead doctor is the person that makes the decision about my suprapubic catheter and how they do the PEG. Xx
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Wythenshawe comes a close second. 👌👐😁😍xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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