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Finally had my 2nd opinion

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    Finally had my 2nd opinion

    Hi everyone, I had a detailed clinical examination at the national hospital yesterday. Still alittle upset but knew it was coming. I have ALS , interesting the professor didn't say MND 🤔. Shocked to find I have upper neurons signs to. I asked if anything is still lefted on the table, he said no.

    I had loads of bloods taken for help in a biomarkers trail/study, hubby and son had lots of blood taken to. The clinic was quite excited to get their hands on 2 men who didn't have mnd. Normally it's men who have mnd and come along with their wives the man explained.

    I'm pleased they agreed to test me for genenic mnd.

    Have to have a brain mri scan and another emg at a later date, tho I not sure why.

    #2
    Originally posted by SAMMY88 View Post
    ​ I have ALS , interesting the professor didn't say MND
    Sorry ALS has been confirmed, Sammy, now you know that there are no doubts and you can invest your energy and emotions towards coming to terms with your diagnosis, not wondering about it...

    Using disease specific terms such as ALS, PLS etc, rather than the umbrella term MND is better, I think.


    Originally posted by SAMMY88 View Post
    ​ Still alittle upset but knew it was coming.
    Most definitely 😪

    And what about future appointments, will they be in the National?

    Sending you love and hugs 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
      Ellie Thanks for the hugs, definitely need them xx

      The professor seemed a bit unsure where I should be seen in future. He settled on 2 yearly visits to The National Hospital, and monthly mnd clinics at my local hospital. Tho today i received an email for an appointment in Jan 23 at The national hospital.

      I can now give up trying to find mimics of ALS/MND and hopefully start to come to terms with this , just need a few more days . It's quite a shocker to hear a specialist in mnd , saying its ALS .

      Hope you are still pain free after your recent steroid injection Xxx

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        #4
        I was thinking how do I say I'm glad you have a diagnosis for clarity rather than I'm glad you have it? I'm sorry but glad you know what you are dealing with and we are all here for you.

        Sending love xx

        🤗🤗😘
        when i can think of something profound i will update this.

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          #5
          SAMMY88 whilst I am so very sorry your fears are confirmed. I hope this definitely closure and extra support from the National hospital will allow you to come to terms with the diagnosis. You are no longer in limbo and questioning everything.

          I hope you make peace with it soon and remember we are all here to support you xx
          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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            #6
            Yes indeed, it is a strange thing that we often feel better about ending the doubt and uncertainty even when the result is bad news.
            I know what you mean about the clinic getting excited about having "a fresh one" - that was certainly the impression I got.
            You seem to have your head in the right place to get to grips with this. Wishing you all strength.
            Hugs from us all to you and your family.
            Hi, I'm Eddie.
            Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
            Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
            Still wondering what the future will bring.

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              #7
              denise TinyLady WheelsOfSteel
              Thanks everyone, it means alot to hear all your support ❤️ xx

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                #8
                SAMMY88 I just want to echo the comments and best wishes to you as others have expressed.

                I too am so sorry to hear you have had the als diagnosis confirmed. It is such a shock and the aftermath of that I found can last some time. I have the pls mnd and yet it's still taken me 6 months to get my head around it.

                Hopefully now you will have a vast amount of professional medical and emotional support so that you have the back up there.

                I too found a diagnosis heartbreaking but also like yourself could then stop searching for other conditions and answers. The time spent doing that can now be spent with family and friends and choosing far nicer ways.

                Thinking of you x
                Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                  #9
                  Zante Thank you xx

                  I've had more tears today but staying strong 💪. We can't change things but I'm now understanding the term positive thinking. Each day trying to find joy in the little things. Xx

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                    #10
                    Originally posted by SAMMY88 View Post
                    Tho today i received an email for an appointment in Jan 23 at The national hospital. ​
                    Perhaps that's appointment 1 of 2 for 2023 (cannot get my ahead around the fact that 2023 is next month!!!)
                    ​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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                      #11
                      Sorry to hear your news Sammy 😔
                      Foxes Never Quit 💙

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                        #12
                        SAMMY88 sorry to hear you have had the confirmation, and even though you had some inclination it is very daunting to be told you do have it. Your bound to be upset. Sending hugs to you.xx

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                          #13
                          SAMMY88 I too am very sorry to hear of your diagnosis. I know it’s a lot to take on board but give yourself the much needed time to digest the information x I too had tears today but Saturday isn’t a good day for me generally x big hugs to you xx

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                            #14
                            JamesW Piglet Madge

                            Thank you all , it's nice knowing others understand exactly what you are going through xx

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                              #15
                              SAMMY88 echoing sympathies for definite diagnosis. Wishing you strength to deal with it, hoping you get lots of good support, and sending love and hugs xx
                              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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