@stephengreer
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Stephen Greer posted a new activity comment 2 years, 5 months ago
Robert.
I used Radicava for about 3 years beginning in Sept. 2017. All infusions after the first starter round were done at home. For long term use – you will likely need a Power Port placed in your chest (or PICC line in arm) designed for access by a Huber needle or PICC line connector and your RN/LPN/home care giver. Virtually impossible to…[Read more]
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Stephen Greer replied to the topic Do you experience muscle twitching? in the forum Living With ALS 2 years, 11 months ago
Danielle
In addition to supplements, I take both Radicava (started 9/17) and Riluzole (started 9/19).
I take many supplements based on the Duke ALS clinic study of 45 known ALS “reversals” that is published on the ALS Untangled site. I have also leveraged recent research linking microbiome health in the gut and neurological function. ALS…[Read more]
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Danielle Uskovic and
Stephen Greer are now friends 2 years, 11 months ago -
Stephen Greer changed their profile picture 2 years, 11 months ago
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Stephen Greer changed their profile picture 2 years, 11 months ago
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Stephen Greer replied to the topic Do you experience muscle twitching? in the forum Living With ALS 2 years, 11 months ago
All,
There have been many great posts and sharing of experiences on this topic and others. I have been a person living with ALS since early 2017.
In addition to all of the supplements and stretching, I focus on a diet of 80-100 g. or more of protein a day to feed the muscles, etc. Protein shakes are an easy way to help keep up the weight and…[Read more]
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Stephen Greer became a registered member 3 years, 7 months ago
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Hello Stephen, 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]
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Hello Stephen, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]
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