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Carol

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@cmdgb6gmail-com

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    Carol started the topic Neurofilament testing for diagnosing. in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 months, 2 weeks ago

    In ALS news today there’s an article about research going on for neurofilament testing to assist in earlier diagnosis of ALS . Anyone familiar with this testing or how to go about having it done?

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    Carol posted an update 6 months, 3 weeks ago

    Thank you for listening again. To continue from my last post I had my 2nd emg done abut 3 weeks ago. Similar findings as first emg but with some active motor fiber loss at the left lumbar and left thumb index finger muscle found now . In person appt with neuromuscular doctor tells me no motor neuron disease. Didn’t do a physical Neuro assessment…[Read more]

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    Carol started the topic Can anyone give advise in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 7 months, 2 weeks ago

    Going for my second emg tomorrow. My symptoms have rapidly progressed. Weakness of all extremities now. Left leg stiff with visible atrophy . Cramps and twitches more increased in different areas. Neuromuscular doctor is doing emg. Any suggestions of what to ask doctor at time of test. Symptoms started a year ago. Everything else has been ruled…[Read more]

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    Carol posted a new activity comment 7 months, 3 weeks ago

    Can you please share with me any info on new drug therapies or who is doing clinical trials that are promising

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    • Profile picture of Dagmar Munn
      Dagmar Munn replied 7 months, 3 weeks ago

      Carol, here is a site that lists all the current ongoing ALS trials https://iamals.org/get-help/als-signal-clinical-research-dashboard/

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    Carol posted a new activity comment 7 months, 3 weeks ago

    Thank you. Looking forward to learning as much as I can to prepare me for the near future and insights of how to cope with the progression of symptoms mentally and physically.

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    Carol became a registered member 8 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 8 months ago

      Hello Carol,

      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]

      • Profile picture of Carol
        Carol replied 7 months, 3 weeks ago

        Can you please share with me any info on new drug therapies or who is doing clinical trials that are promising

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 7 months, 3 weeks ago

          Carol, here is a site that lists all the current ongoing ALS trials https://iamals.org/get-help/als-signal-clinical-research-dashboard/

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      Amanda replied 8 months ago

      Hello Carol, 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 Carol
      Carol replied 7 months, 3 weeks ago

      Thank you. Looking forward to learning as much as I can to prepare me for the near future and insights of how to cope with the progression of symptoms mentally and physically.

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