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After another long day

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    After another long day

    My name is Annemieke, 31 yrs old. i live in the netherlands and am a mother of 2 beautiful boys.. i love to go outside

    another long day of testing, our fear has unfortunately been confirmed. als limb onset. Eveything else is ruled out

    although we slowly started to
    suspect it, the shock is still big. The hardest thing for me now is looking at my children and knowing that they won't remember me. I hope we will get some time together as a family and or vacation to Turkey will go trough in august

    Our dreams are falling apart. We were lucky enough to buy a house last year.. our 2nd son was born, and now I can only think how are we going to do this later. My work as a nurse has become almost impossible.

    We will have to give it a place, and als belongs to us from now on. My husband has a harder time because he blindly trusted the 1st neurologist who said he dared put his hands in the fire that it wasn't a.l.s. And now 3 appointments further with a specialist and his hopes have been dashed.

    I'm sure I can find enough support and help here.

    For now we need to give it a place and find a way to go on with it because this shitty disease will not wait.

    thanks for every kind word that people said when i was still in limbo. It helped a lot!

    Anne, I'm so sorry to hear, at your young age, you were diagnosed with ALS. It breaks my heart.

    Right now your whole family/friends are probably in shock, even after a long limbo. The shock will leave and it will be replaced with other emotions. I take Remeron to help me sleep and keep depression at bay. Just remember, your boys will know you and, hopefully, you'll have a good deal of time with them. It seems like children deal with progression better than adults.

    Do things that make you and your family happy. I know planning is in order but you will still have time to enjoy your family.
    Living live on the beach. Dx 2015 ALS (limb onset)


      So sorry to hear Anne123


        KimB thanks! We have a lot of things ahead of us. Luckely we had a good conversation with the doc and he took the time to answer questions. So that was fine.

        starting with riluzol, and beginning with fysio to help to muscles as much as we can.

        I will keep the medicine remeron in mind!


          I'm so sorry and feel for you and your family. I was diagnosed in January this year with als bulbar. Onset.... Going through all the tests I was told trap nerves. Then Ms. To be finally told I had als. My life and my wife's and daughters have been destroyed. Like you I'm trying to arrange a last trip abroad to say goodbye to mine and my wife's family and firends. I just hope I have time... But you are in a good place here as there's loads of surport. And you can always talk we me if you like.... Be strong and you and your family enjoy every moment you can ๐Ÿ™๐Ÿ™๐Ÿ™๐Ÿ™๐Ÿ‘ช


            Geoff i am sorry for your diagnosis to.
            I hope they will find a way to diagnose sooner, the false hope, the unsure, the doubt that you are going crazy is hard. I am glad that i can put my middle finger up now to people who think they now my body better than myself๐Ÿ™ˆ.

            I hope you can get the trip you want! And its nerve wrecking to not now how long you have, planning in the future is not so normal anymore. Living day by day now.

            I hope you, and everyone here will get a lot of memories for the family!


              Sorry Anne123 that you have had this diagnosis and at a young age. It takes time to take it all in. However, people can and do live with this, and progression can slow/plateau for periods of time, not all the statistics fit everyone. I was also limb onset 11 years ago and still have a good quality if life. I was also younger than the average age range. Try to stay positive x


                Anne123 Welcome Anne.

                Were you diagnosed in UMC Utrecht? Leonard van den Berg is a highly regarded ALS expert.

                Are you being put forward for any clinical trials?
                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.



                  Hi Anne123. I am so very sorry for your diagnosis. It's such a shock and terrible when you have young children.

                  I hope you have lots of support from the professionals and it sounds like you are surrounded by love. The forum is a good place for friendship and understanding.

                  If you possibly can try to take one day at a time. Take care of yourself.

                  Love Debbie xx


                    So sorry your fears were confirmed Anne123. It was not good to be in limbo, but finding yourself with this diagnosis must be hard too, no matter how much you suspected it.

                    I hope youvfind support and friendship here that helps you make the best of it so you can have amazing memories with your loved ones 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!


                      Ellie yes i was diagnosed in Utrecht! Leonard is indeed one of the best. Buth i didnt see him, buth a collegea. Buth the second emg was done by the same as my first one there! I can not remember his name buth he was so fast and straight forward. No muscle could escape him.

                      Clinical trials are a little bit tricky buth we want to try it. Because my crohn needs to stay in rimission, and we dont know how it will react to medicines. Losing weight is a no go buth we are gonna try. I also have a heart problem what makes its complicated, buth i want to try everything to be here as long as possible!

                      We also need to make a choice if we want to stay in utrecht for the check ups. Or if we want to do the check ups in het UMCG in Groningen with the mnd team over there. That is way way closer buth i think i stay in Utrecht it feels better.


                        So sad to hear your diagnosis and the difficulties getting there. I hope the medicines help and if there are reactions they will be small. It has been a long 2 years reaching a diagnosis for my wife. We are still trying to get the local team involved for assessment of speech and breathing issues.
                        Hope you have good times ahead with your young family.