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Kiki

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@kiki123

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  • Profile picture of Kiki

    Kiki replied to the topic The Waiting is the Hardest Part in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 10 months, 2 weeks ago

    Thank you for the great idea to record Dr sessions. This will not only help Amanda but also other undiagnosed readers.

    Kathy, you’re totally right for undiagnosed readers without a genetic mutation, there is still a lot of hope esp. when they haven’t got the full differential diagnosis: spinal tap, blood work, MRI, CT, EMG, EEG, ENG etc…. when…[Read more]

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    Kiki replied to the topic Any recommendations for good "mid level" technical reference on ALS neurology? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 10 months, 3 weeks ago

    Not sure if I understand the question correctly but I thought that the videos of everythingals on Youtube are quite interesting. A lot of research but also some theories on the cause are available.

  • Profile picture of Kiki

    Kiki replied to the topic The Waiting is the Hardest Part in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 10 months, 4 weeks ago

    Hi Amanda,

    I just read this post and keep thinking of you. I wonder how you are doing. It’s so kind of you to volunteer and help pals/ als research and as every Pals you deserve the best treatment.

    I know sometimes life is cruel and living with the knowledge of having a mutation must be very hard so it’s totally normal to tear up at times. But I…[Read more]

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    Kiki and Profile picture of GeorgiGeorgi are now friends 10 months, 4 weeks ago

  • Profile picture of Kiki

    Kiki replied to the topic Should I get genetic testing? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 11 months ago

    Hi @Georgi,

    Thank you so much for your informative response which I just saw unfortunately but I’ll try to check the lab you recommend.

    As Germany is very conservative genetic testing seems to be a bit problematic without a diagnosis of ALS in ones family though I’d spend the 85 €. When you have a diagnosis financing the genetic test depends o…[Read more]

  • Profile picture of Kiki

    Kiki replied to the topic New Referral Coming!! in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

    Hi Lisa,

    Not sure if this is good or bad news. A new neuro will perhaps have a different approach and better idea of what might be wrong.I hope that you are right and have a certain form of neuropathy or age related atrophy/ myositis?. Guess a whole spine mri seems about right to rule out other things. Though when an emg Shows chronic…[Read more]

  • Profile picture of Kiki

    Kiki replied to the topic c9orf72 ALS – Metformin as a prophylactic? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

    <b>Hi, I read about the supplement berberin which has similar effects as metformin. Also vitamin E, D and B might </b><span style=”font-size: 16px;”><b>delay</b></span><b> onset. Although I would always talk to my PGC before taking any supplements due to the mentioned side effects/…[Read more]

  • Profile picture of Kiki

    Kiki replied to the topic Genomic Assessment as a Tool for Biological Discovery-Tailored Treatment in ALS in the forum Research Topics 1 year, 2 months ago

    Very intersting article. My granddad had FTD and in the end he could neither swallow nor speak so even the symptoms are kind of related to ALS but with the science behind this makes even more sense. Though I guess finding a super pill for both neuro degenerative disorders seems far away to me. ALS itself seems like multiple disorders at once that…[Read more]

  • Profile picture of Amanda

    Amanda and Profile picture of KikiKiki are now friends 1 year, 2 months ago

  • Profile picture of Kiki

    Kiki replied to the topic Confused about progression of symptoms in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    Thank you for your response Lisa, I really hope that you will receive answers this Friday. Guess the questions you ask depend on your Neuro. If you are still open for other causes he will surely not put you in the anxiety corner but with a confirmed atrophy and your increasing symptoms you have definitely the right to ask for another Emg.

    The…[Read more]

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    Kiki replied to the topic Confused about progression of symptoms in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    Hey Lisa,

    I just came across your thread. Just wondering how you are?? At the moment I am also in the middle of getting diagnosed. Like you I still have a little hope left. Also I read a lot about the Emg. Since you wrote that you had several dirty Emgs I am wondering what takes neuros so long to come up with a diagnosis. I read that with 2…[Read more]

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    Kiki replied to the topic Awaiting diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    Hi Deborah,

    I also haven’t been diagnosed yet and was wondering whether you found out if it is ALS ? of course I hope it’s sth else more treatable.

     

    Best wishes,

    Kiki

  • Profile picture of Kiki

    Kiki posted a new activity comment 1 year, 3 months ago

    Hello Dagmar,
    Thank you for your warmth welcome and all the kind word. At first I am very sorry that you have to live with this devastating disease though 10 years is a time and I really hope that progression will stop. I think research might be getting closer to a solution or at least I try to have hope. Also I’m curious about the forum threads…[Read more]

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  • Profile picture of Kiki

    Kiki posted a new activity comment 1 year, 3 months ago

    Hello Amanda,
    Thank you ever so much for your lovely welcome massage. I feel very sorry that you and your family have such a long history of dealing with this cruel disease but you are totally right, the researchers will find more and more answers especially for genetic cases. Its so great that you and your family support research. I am curious…[Read more]

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    • Profile picture of Amanda
      Amanda replied 1 year, 3 months ago

      You are welcome!! And please, don’t worry about your English. There are people from all over the world on the forum. It helps us learn about other cultures 🙂

  • Profile picture of Kiki

    Kiki replied to the topic Should I get genetic testing? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    Hey there,

    At first thank you for providing this forum and helpful advice/studies. I am just wondering how people get tested as the whole ALS topic is quite new to me.

    We have FDT ( granddad, mom) in our family history but no ALS. At the moment I have strong symptoms but no confirmed atrophy. I’m quite young (29yo). Should I get tested for the…[Read more]

  • Profile picture of Kiki

    Kiki posted a new activity comment 1 year, 3 months ago

    Hello Mimi, how are you? I have similar symptoms and was wondering if you got diagnosed with ALS or if they found another cause ? I remember that you said you were in the middle of diagnosis and not sure if it was ALS. Maybe it is sth anxiety related? I hope that you have sth treatable!!
    Best wishes Kiki

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  • Profile picture of Kiki

    Kiki became a registered member 1 year, 3 months ago

    • Profile picture of Amanda
      Amanda replied 1 year, 3 months ago

      Hello Kiki, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

      • Profile picture of Kiki
        Kiki replied 1 year, 3 months ago

        Hello Amanda,
        Thank you ever so much for your lovely welcome massage. I feel very sorry that you and your family have such a long history of dealing with this cruel disease but you are totally right, the researchers will find more and more answers especially for genetic cases. Its so great that you and your family support research. I am curious…[Read more]

        • Profile picture of Amanda
          Amanda replied 1 year, 3 months ago

          You are welcome!! And please, don’t worry about your English. There are people from all over the world on the forum. It helps us learn about other cultures 🙂

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 3 months ago

      Hello Kiki,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions…[Read more]

      • Profile picture of Kiki
        Kiki replied 1 year, 3 months ago

        Hello Dagmar,
        Thank you for your warmth welcome and all the kind word. At first I am very sorry that you have to live with this devastating disease though 10 years is a time and I really hope that progression will stop. I think research might be getting closer to a solution or at least I try to have hope. Also I’m curious about the forum threads…[Read more]

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