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Advice on process of diagnosis

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    #16
    Such kindness thank you. I am no longer alone on this path. This is all new to me. This may be a stupid question so apologies in advance but is it the hospital that assists with tube feeding, breathing etc and all your needs

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      #17
      I do it at home πŸ‘πŸ˜πŸ˜„πŸ€—xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #18
        I mean implementing it for the first time . Sorry if I sound like a phleb

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          #19
          Hey we all started the same way. Never apologise to us. 😁😊☺️😘xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #20
            Originally posted by Hairbsb View Post
            Such kindness thank you. I am no longer alone on this path. This is all new to me. This may be a stupid question so apologies in advance but is it the hospital that assists with tube feeding, breathing etc and all your needs
            Once you receive a diagnosis your neurologist will write a report to your GP. I had a mixture of onward referrals from GP & neurologist for all the other health care professionals including the respiratory clinic, Speech & language therapy and community Neuro rehab team (this team has OT, physio, dietician). There are others however it seems to differ slightly depending on geography.

            It can feel overwhelming....take it as slow as you prefer...πŸ‘πŸ»xx

            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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              #21
              Cheersie. Is your profile pic inspector gadget by any chance? I used to watch that as a child?

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                #22
                Thank you LindaB im a pest for always being ahead of myself. One step at a time as they say. X
                Last edited by Hairbsb; 14 January 2022, 16:23. Reason: Got name wrong

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                  #23
                  Originally posted by Hairbsb View Post
                  Thank you LindaB im a pest for always being ahead of myself. One step at a time as they say. X
                  I imagine you'll want the confirmation of diagnosis before thinking about all the rest. This is a difficult time as we've all been there and all hoped the answer/diagnosis would be different..I remember thinking with a bit of luck it's MS....however it wasn't to be...
                  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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                    #24
                    Correct . You know exactly what's going through my mind

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                      #25
                      Could you advise how I can see notifications on the forum. Everytime It takes me to message centre and I end up having to go to my Hotmail

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                        #26
                        Well spotted it is indeed Inspector Gadget! πŸ‘πŸ˜πŸ‘πŸ˜˜xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #27
                          Hairbsb I log in and click on the heading β€œTodays Posts” to catch up, I don’t know if that is the best way. If you have been tagged with @yourname a red indicator will appear at the top of the page under a box labelled Notifications. I’m not very good at navigating πŸ™„
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #28
                            Thank you. I have to say this has been a godsend today. I got told of my diagnosis on Tuesday to be confirmed after anti body tests and if it wasn't for you guys I would just sleep

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                              #29
                              Still getting rather annoyed at myself. I click on notification button but it doesn't take me to the new post. It takes me to the message centre.

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                                #30
                                Hi Hairbsb
                                So sorry it looks like neurologist thinks you have bulbar palsy subject to some other tests being completed.
                                I was diagnosed with ALS during covid times and insisted my husband or daughter attended as I knew I was going to receive bad news and wanted support.

                                After your anti body results I guess you will get a diagnosis confirmed.The neurologist should then explain who he / she will refer you to for ongoing support.
                                Can’t deny it’s a shock…even now I sleep a lot more 19 months after diagnosis.


                                Lots of support on this forum and it’s ok to ask anything.Take it steady one day at a time.Not always easy when head is in a whirl.

                                Best wishes
                                Mary x

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