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    Covid

    My daughter and three primary aged children tested positive yesterday. They’ve been ill for a few days. Stupid Boris lifted restrictions too soon, not good for all of us vulnerable people 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
    Lynne K I agree....my 15 yr old granddaughter has been infected twice...now my daughter (her mum). No consideration for ppl in our situation😠
    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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      #3
      LindaB too true Linda 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


        #4
        Boris was a fool before Covoid so he is a fool after
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          Originally posted by matthew55 View Post
          Boris was a fool before Covoid so he is a fool after
          100%👍🏻
          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.​​​​​​

          Comment


            #6
            Letter concerning covid and riluzole.

            Patients taking riluzole . If you test positive for covid you should stop taking riluzole for a short period. You will need to take advice from your GP or neurologist as to whether you can resume taking riluzole once you have received a negative covid test from a lateral flow or PCR test. A blood test is also recommended following a period of isolation due to covid.

            This is from mnd care coordinator
            when i can think of something profound i will update this.

            Comment


              #7
              Originally posted by matthew55 View Post
              Boris was a fool before Covoid so he is a fool after
              Exactly 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


                #8
                Originally posted by denise View Post
                Letter concerning covid and riluzole.

                Patients taking riluzole . If you test positive for covid you should stop taking riluzole for a short period. You will need to take advice from your GP or neurologist as to whether you can resume taking riluzole once you have received a negative covid test from a lateral flow or PCR test. A blood test is also recommended following a period of isolation due to covid.

                This is from mnd care coordinator
                I didn’t know that but luckily I haven’t got Covid 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
                  I thought just incase I'd tell everyone. Xx
                  when i can think of something profound i will update this.

                  Comment


                    #10
                    Originally posted by denise View Post
                    Letter concerning covid and riluzole.

                    Patients taking riluzole . If you test positive for covid you should stop taking riluzole for a short period. You will need to take advice from your GP or neurologist as to whether you can resume taking riluzole once you have received a negative covid test from a lateral flow or PCR test. A blood test is also recommended following a period of isolation due to covid.

                    This is from mnd care coordinator
                    Is there any indication of why Riluzole should be stopped?
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                    Comment


                      #11
                      No, nothing.

                      It's from
                      mnd southwest peninsula network,
                      dept of neurology ,
                      derriford hospital, Plymouth.

                      I'm presuming everyone should be getting this letter.
                      when i can think of something profound i will update this.

                      Comment


                        #12
                        I have Covid for ten days now it’s been brutal, at no point any of my team of helpers mentioned this , will stop now thanks 🙏

                        Comment


                          #13
                          You are welcome
                          just hope everyone reads this.
                          when i can think of something profound i will update this.

                          Comment


                            #14
                            I've had no letter about covid and Riluzole..did have a letter from the NHS about specific treatment if infected and a home test kit.
                            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.​​​​​​

                            Comment


                              #15
                              We had that as well or rather Stephen did. I thought wonderful what about me!
                              when i can think of something profound i will update this.

                              Comment

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