Announcement

Collapse
No announcement yet.

Help needed

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Hi all, it wasn’t good news i’m afraid.

    Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.

    Comment


      #17
      Hello Edinburgh21,
      Sorry that this happens to anyone, but you are in the right place. So far you are walking and that is good news. Never give up!

      Comment


        #18
        Chin up and Stay Strong. You're not alone my friend.👍😁🤗🌷xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #19
          Hi Edinburgh21 sorry to hear you're bad news....you'll find lots of good advice and support on here. Now you have a diagnosis support should start clicking into place from all the neuro medical teams
          Take care...just a day at a time


          obviously I took the post at face value...dear oh dear...
          Last edited by LindaB; 20 August 2021, 09:54. Reason: Edited as the post wasnt factual after all
          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.​​​​​​

          Comment


            #20
            Originally posted by Edinburgh21 View Post
            Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.
            🤨 I am rather confused

            Who has told you what? 🤔🤔

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

            Comment


              #21
              Hi all

              Apologies for my previous post. I had gone to A&E in a blind panic as I believed I had breathing issues. They tested my vital signs and sent me away again. I was trying to tell them CO2 retention is the issue not the O2 levels but it fell on deaf ears.

              So the current position is the Neurologist I saw just took some details, tested reflexes and did a general exam of me to test weakness, no EMG etc despite me mentioning breathing/swallowing issues and said the symptoms could all be explained by more benign reasons.

              Now I am currently in the position of not being able to swallow without concern the food and drink are completely going down the right way as sometime my nose runs at the same time and I frequently cough. When I spoke to my GP has assured me that if it was going down the wrong way you would definitely know straight away. (Is this correct?). Given I feel thirsty and dehydrated no matter how much I try to drink and have dry skin in places I am not too sure, especially as losing weight too.
              They also said MND would not present breathing and swallowing issues without significant other indicators first, not sure that is true!

              I’m also concerned about breathing and CO2 retention, yawn a lot in the afternoon, have blotchy skin on the forehead and am worried to go to sleep at night!

              Finally I’m forgetting things here and there and don’t have a great attention span at the moment- could be stress related but it is a bit worrying with the other symptoms i’ve got as mentioned on my original post.

              Once again apologies for my last post and I would appreciate your thoughts as I’m hitting a brick wall medically.

              Comment


                #22
                Originally posted by Edinburgh21 View Post
                Hi all, it wasn’t good news i’m afraid.

                Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.
                Shame on you for pretending to have been diagnosed with MND, that is unforgiveable - now you expect more input???
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #23
                  I am truly sorry for putting that, I was in a blind panic at A&E but that is no excuse.

                  I had/have put two and two together with symptoms my mother had, but again it is no excuse.

                  Comment


                    #24
                    Edinburgh21 You do need help but professional mental help and your mother needs to be reported.
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #25
                      Hi Edinburgh21

                      You really need to try to stop worrying about MND. You've been told several times now that you don't have MND. If you had CO2 retention then it's likely that your O2 levels would be dropping and so A&E would have picked up on it. CO2 retention is something that happens and most people wouldn't even realise that it's happening. It isn't a symptom that people usually report themselves. It's picked up by a clinician.

                      The respiratory symptoms and swallowing symptoms that you describe do not sound like symptoms of MND. They don't typically appear in the way that you are describing.

                      I think you need to bear in mind that you are talking to people who are living with MND. Posting that you've been diagnosed with a rapid onset that is so fast that you won't have time for a diagnosis, is very distressing to people who are living with the disease or those who are suspected of having MND.

                      Best Wishes

                      Rachel
                      MND Connect Adviser
                      MND Connect
                      Contact us on 0808 802 6262 or at [email protected]

                      Comment

                      Working...
                      X