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    How to contact you only

    I have tried 3 times to send an email to the mndconnect email address, each time, my email is blocked. As it is something i don't want everyone to see, unless approved, i am asking why my email gets blocked.

    thank you
    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

    #2
    They'll be back on Tuesday because it's long weekend, Evelyn.

    You can send them a PM, they are a member like you and I are, and they'll see it on Tuesday morning, and they can sort out whatever is wrong with the emails too. 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
      Hi Evelyn. When you say blocked do you mean bounces back undelivered? Do you have another email address so could send a test to see that works.

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        #4
        I think i will try to PM them. No, when i send an email, i am told that their server is blocking me from writing - I am sure it is nothing personal, but...
        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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          #5
          Suppose it's possible it's run out of space. Yes maybe better luck with PM

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            #6
            EvelynMW It's not only you Evelyn, you'll be somewhat pleased to hear. I sent an email to MND Connect to see what happened and had the same result.

            It's a "smtp; 550 permanent failure for one or more recipients", which is probably an anti-spam filter but one which may block all emails from unknown senders. Hopefully they can find a solution, but do PM them.

            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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              #7
              Ellie I did PM them, but it was at the weekend; they are online today (Tuesday), so i will hope for a response soon.

              I lost Monday, migraine. Woke with a headache, didn't take my special pill, (idiot), tidied our bedroom (following last weeks short break), had a shower and washed my hair, then my head really kicked off. Pill, bed, with fan full on, Hubby brought lunch up - the smell increased my nausea. He took it away, i threw up, took my second pill and finally got off to sleep. Woke up 7 pm. Took a 3rd pill to knock off the remaining symptoms, and back to bed after 10 pm...

              Have .not eaten yesterdys lunch: stuck to bread and crackers only, safer.

              I am very lucky, it is rare that my migraines go over 1 day - the pills i take are my magic (triptans).

              Sunday, a friend took me to the Cambridge Botanic Garden. Must pick up a map next time! Was very hot and was probably the cause of the overnight headache: never did get on well with sunshine, even though i wore a big brimmed hat!

              Shopping later today and a dog walk. Hamerton Zoo Park tomorrow - if the thunderstorms stay away.

              Hmm, obviously feeling chatty today, only intended to answer @Elllie! Enough rambling, 1 more spell check, and post.

              First day online since Saturday. Spell check complete, crossing my fingers and....

              Right, spell check done
              Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                #8
                Hi EvelynMW

                I'm assuming it was the MNDConnect account that you PM'd over the weekend? As we've not received anything?

                We're not aware of any issues with the [email protected] email address, but have flagged it internally with the team and our ICT team to look into. Feel free to PM us in the meantime or send a direct email to [email protected] and we can pick it up and pass it on.

                Hope that helps,

                Forum Admin.
                Our working hours are Monday to Friday 8:30am until 5pm

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                  #9
                  EvelynMW As a fellow migraine getter, I fully sympathise and thank pharma for developing Sumatriptan!!

                  Have a lovely day out today 🌞 xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Our ICT team have told us that there was an issue with gmail addresses getting through to MND Connect over the weekend but this was resolved this morning.

                    So if your email was a gmail address EvelynMW it maybe worth trying again as it should get through now.

                    Hope that helps,

                    Forum Admin.
                    Our working hours are Monday to Friday 8:30am until 5pm

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                      #11
                      Something changed today as I suddenly staterd getting notification emails. 🤔🤭😁🤗😍 XX
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        Ellie I'm a Zolmig triptan. They moved me onto another cheaper one once, but had to go back.....
                        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                          #13
                          Me too Evelyn, the rapimelts xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Not very fair eh? Migraines and MND? Mind you, it is often something ive done that leads to migraine, usually being stupid!
                            Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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