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Lori

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@lori

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    Lori replied to the topic Riluzole and Radicava in the forum Living With ALS 1 year, 1 month ago

    Hello,
    My husband was on Radicava for 2 years when all of a sudden he had an anaphylactic allergic reaction to it.
    Has anyone else had this?

    The only thing different is that he had just recovered from Covid and then resumed his treatments.

    It’s very disappointing when there aren’t other treatments (other than riluzole)

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    Lori replied to the topic Modifying your Home in the forum Living With ALS 1 year, 5 months ago

    Thanks Lisa

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    Lori replied to the topic Modifying your Home in the forum Living With ALS 1 year, 5 months ago

    That’s interesting John. Are you living all on one floor so you don’t have to do stairs?

    I will look into the ceiling lift vs house more.
    thanks!

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    Lori replied to the topic Modifying your Home in the forum Living With ALS 1 year, 6 months ago

    It is confusing to know all that will be needed with this disease!
    we have heard that a chair lift is only temporary once you lose upper body strength but a contractor just told us that he has one with a harness that can work.
    Does anyone have experience with this?

    Is this really possible? It would mean we don’t have to renovate our main floor t…[Read more]

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    Lori replied to the topic Should I get genetic testing? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 11 months ago

    It appears there are lots of different opinions on the genetics. We were told by the genetics Dr that they believe my husbands C9 mutation is familial now(no longer sporadic). As he has no MND in family history and only some FTD in older relatives >80 years old, his parents are getting tested to confirm this. This will take 2 months to find…[Read more]

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    Lori replied to the topic Should I get genetic testing? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years ago

    Hi Amanda,

    thanks for your reply.

    it is quite confusing having been told my husband has the C9 gene mutation with no family history.

    I could see some of my kids wanting to participate in research in the future but right now they are still in shock. We will definitely let you know in the future. We are from the Toronto area in Ontario, Canada.

  • Profile picture of Lori

    Lori replied to the topic Should I get genetic testing? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years ago

    Hello,

    has anyone else been a “sporadic” ALS case, but then learn that they have the C9 gene mutation? This just happened to my husband who is only 52.

    There is no history of ALS known in my husbands family and they are a large family. Grandparents living into their 80s. 2 cases of Dementia but both in their 80s.

    Does this mean that my 4 kid…[Read more]

    • Profile picture of Amanda
      Amanda replied 2 years ago

      Hello Lori,

      My family has a significant history of ALS and a genetic mutation. In theory, your children would have a 50% chance of inheriting the mutation. Just because you have the mutation that doesn’t necessarily mean you will get ALS. In some families it seems to be more widespread, like mine. However, I do have a cousin that has the…[Read more]

  • Profile picture of Lori

    Lori posted a new activity comment 2 years, 7 months ago

    Hi Giles. Sorry to hear of your diagnosis. It is my husband who has ALS. He had fasciculations For 2 years and just now started to have some hand weakness. Neurologist said this is a good sign that he is a slow progressive. Best wishes for you!

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    Lori replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 2 months ago

    Thanks again everyone. Sounds like my husband is in the early stages of ALS and the Dr just hasn’t seen another patient present like him. Praying it is a slow progressing one.

    Hugs to all of you 🙂

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of LoriLori are now friends 3 years, 2 months ago

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    Lori replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 2 months ago

    Thanks everyone for the sharing and suggestions.

    Marianne-yes we do know about benign fasciculations and were  hoping for that diagnosis, but the EMG showed nerve damage (done by an ALS neurologist) so that is why they diagnosed ALS.

    Michael- do you too only have twitching? Were you also diagnosed based on your EMG?

    thank you all 🙂

  • Profile picture of Lori

    Lori replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 2 months ago

    Thank you- we will try that.

  • Profile picture of Lori

    Lori replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 2 months ago

    Hello, I am interested in this topic of fasciculations as that is what alerted the Dr to have my husband tested for ALS. First he had them on and off mostly on his left side starting in January of 2019 (just turned 50) which he attributed to mild arthritis in his shoulder and his hip replacement he had done 2 years prior. He didn’t think much of i…[Read more]

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    Lori posted a new activity comment 3 years, 2 months ago

    Thanks Amanda for the warm welcome!

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    Lori posted a new activity comment 3 years, 2 months ago

    Thanks Dagmar! So nice of you!
    I am trying to get on the discussion regarding fasciculations that you had posted

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  • Profile picture of Lori

    Lori became a registered member 3 years, 2 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 years, 2 months ago

      Hello Lori,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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. If you have any questions, concerns or even…[Read more]

      • Profile picture of Lori
        Lori replied 3 years, 2 months ago

        Thanks Dagmar! So nice of you!
        I am trying to get on the discussion regarding fasciculations that you had posted

    • Profile picture of Amanda
      Amanda replied 3 years, 2 months ago

      Hello Lori, nd 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 Lori
        Lori replied 3 years, 2 months ago

        Thanks Amanda for the warm welcome!

    • Profile picture of Giles Clay
      Giles Clay replied 2 years, 7 months ago

      Lori, three months into my suspected familial ALS self-diagnosis — made official last month — muscle weakness has yet to REALLY hit me … Regular whole-body fasciculations remain my MAJOR symptom though, which is why I connect with you. This symptom is hardly typical amongst the ALS masses. I only hope it remains my MAJOR symptom like it has in…[Read more]

      • Profile picture of Lori
        Lori replied 2 years, 7 months ago

        Hi Giles. Sorry to hear of your diagnosis. It is my husband who has ALS. He had fasciculations For 2 years and just now started to have some hand weakness. Neurologist said this is a good sign that he is a slow progressive. Best wishes for you!

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