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Joan

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@bakereld

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    Joan replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 1 week ago

    Please se a neuromuscular doctor and no one else
    It’s important to see the correct specialist and it should not take a year. It is a diagnosis of exclusion

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    Joan replied to the topic C9 research in the forum Research Topics 4 months, 1 week ago

    I have the C9 defect.  what study are you in and through whom or where?

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    Joan replied to the topic Is NF-L in CSF Lumbal Puncture a reliable BioMarker? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    I suggest a second opinion and if you have the means I would go to Mass general .  Fasciculations are a hall mark of ALS. no other disease causes them

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    Joan replied to the topic Understanding PFT in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 7 months, 2 weeks ago

    You need to see a pulmonologist ( lung doctor) specializing in ALS

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    Joan replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 8 months ago

    Jim

    the amx0035 is in a phase 3 trial Phoenix and is applying for expanded access also which you could qualify for potentially

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    Joan replied to the topic Alternative Medicine and ALS in the forum Living With ALS 8 months, 2 weeks ago

    Thank you

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    Joan replied to the topic Dude about diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 8 months, 3 weeks ago

    I would not wait but see an ALS expert and they are hard to find
    She needs to have everything else excluded but then should consider treatment now and not wait
    You never know how long you have to live

    i had to go to another state to see the correct doctors

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    Joan replied to the topic Dude about diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 8 months, 3 weeks ago

    I would not wait but see an ALS expert and they are hard to find
    She needs to have everything else excluded but then should consider treatment now and not wait
    You never know howling you have to live

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    Joan posted a new activity comment 8 months, 3 weeks ago

    Thank you

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    Joan became a registered member 8 months, 3 weeks ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 8 months, 3 weeks ago

      Hello Joan,

      Welcome to the forum! I am one of the forum moderators and a person 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 by typing a…[Read more]

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        Joan replied 8 months, 3 weeks ago

        Thank you

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