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Possible spark for MND

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    Possible spark for MND

    Hello everyone, my name is Bob Fraser, but it is my dear wife Julie, aged 64, who has been diagnosed with MND in September. Being so new to it we are still groping around to find out what can be done. It is a little frustrating in that Julie encountered the condition in her work as an Advanced Nurse Practitioner visiting patients in their homes for the local doctor on call service (BARDOC), and now finds herself a sufferer. The point I want to raise is that her symptoms began to appear within five days of her first Covid inoculation, and worsened with the second, to the point where she had a week in hospital as a possible stroke victim. We are told it is unlikely that the jab precipitated the disease but we canโ€™t get it out of heads.

    #2
    Hello haywardbob welcome to the place where you can off load everything. It's tempting to try and blame something but ultimately it's better just to accept what is, is. Time is precious now and should be spent enjoying your time together to the full. Stay Strong ๐Ÿ‘๐Ÿ˜๐Ÿค—๐Ÿ˜ xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #3
      haywardbob welcome to you and your wife....sorry to hear the diagnosis. I haven't heard of any connection anecdotally between the vaccine and MND however I'm sure there will be research should the numbers suggest a link?
      Can I ask which vaccine she had?
      Welcome to the forum albeit somewhere you may not have thought you'd ever join...you're among friends & it's a great place for support.๐Ÿ‘
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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        #4
        Hi Bob - Sorry you and Julie find yourself among us. I thought it was exercise triggered my mnd. But perhaps we were just plain unlucky. First symptoms of my disease started before the pandemic or the vaccines. Love to you both xx

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          #5
          haywardbob A warm welcome to the forum Bob & Julie.

          Originally posted by haywardbob View Post
          The point I want to raise is that her symptoms began to appear within five days of her first Covid inoculation,
          By the time first symtpoms appear, a substantial number of motor neurons will have been damaged to the point of being unable to function and this process happens over a period of months.

          We often find if we have an infection or even a bad head cold that our progression is impacted, whether the vaccines exacerbated Julie's symptoms is probably anyone's guess - progression does come in phases, notably in the early stages, as muscles which were taking up the slack also fail.

          I hope Julie has good support from community services and that both of you have personal support too.

          Love Ellie.
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

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            #6
            Hi โ€˜Bob, sorry about Julieโ€™s diagnosis. A good idea is for her to voicemail bankingโ€™s if she feels up to it. Speak Unique gets good reviews and itโ€™s easier than some other voice banking companies, less voices to record I found out recently. Take care, Lynne
            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.

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              #7
              haywardbob
              Hi and so sorry to hear of Julieโ€™s diagnosis.Many people on here had MND pre covid times.As Julie was an ANP she will know a lot of medical info related to MND.
              I too met several people with MND when I worked as a social worker.
              For me it was a matter of lists and more lists to get on with.Sorted benefits, voice banking,joined local zoom support group(had already done will, Lasting power of attorney)
              Found out which hospice team I would be supported by.Ordered a lifeline.Then as time went by I felt less anxious as I met palliative care team and have less frequent anxiety episodes.
              Most important try and enjoy each day , see family and friends and get out and about.Keep making memories together and use this forum for advise and support.
              The initial shock can be awful on diagnosis but it lessens for many as time goes on.
              Sorry Julie also had a possible stroke too.She must feel drained.
              Take care
              Mary x

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                #8
                When I foolishly PEGed 60mil of genuine Dutch gin I was rushed to Hospital and they thought I'd had a stroke! ๐Ÿ˜๐Ÿ˜œ๐Ÿค—๐Ÿ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                  #9
                  I think it's highly unlikely to be anything to do with Covid vaccination, at least in the short term. In the UK, we normally have about 1,700 diagnosed with MND each year, but out of 48 million people vaccinated only 7 cases of MND have been reported. So if anything, vaccination looks possibly to have reduced the risk of a MND diagnosis.
                  They don't really know, but there are other far more likely triggers. For example, 70-80% of people diagnosed have disc degeneration in the neck.

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                    #10
                    My dead mum gave me mine. I always was her favourite! ๐Ÿ˜‰๐Ÿ˜๐Ÿค—๐Ÿ˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                      #11
                      Originally posted by PaulaF View Post
                      ... out of 48 million people vaccinated only 7 cases of MND have been reported.
                      I am interested in reading the report from which that statistic came, can you please post the link.

                      Thanks.

                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

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                        #12
                        Not sure we're allowed to attach links? It's on a gov.uk site called Coronavirus Vaccine Weekly Summary of Yellow Book Reporting. The statistics are attachments at the bottom - there is one for each brand of vaccine. There are only 2 MND reports with Pfizer and 5 with AstraZeneca. Just by random chance, I would have expected more, given the number who have been vaccinated.

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                          #13
                          Thanks for info Paula x

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                            #14
                            A Yellow Card report does not necessarily mean that the adverse reaction was caused by a vaccine, so the reported 7 cases of MND as an adverse reaction cannot be substantiated.
                            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            โ€‹

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                              #15
                              I think it's very dangerous and irresponsible to speculate about something we can't possibly understand.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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