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Reese replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 1 day, 9 hours ago
When I went to 2 packs a day – I got a horrible headache, borderline migraine which I’ve never had. Currently taking 1 pack per day and still occasionally get day long, recently 2 day long, headaches where ibuprofen doesn’t help. I’m afraid to try 2 a day. Amylyx told me a lot of people can’t handle twice a day. There’s a lot out there on Rel…[Read more]
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Reese replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 1 month ago
Don’t exercise strenuously, archive your voice while it still sounds somewhat normal or use a recorded presentation / conversation for the dataset as I did, be efficient in your movements – think ahead before moving so there is no wasted efforts, get creative using your fingers for tasks – use them in nonconventional ways along with tools.
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Reese replied to the topic What questions do you have for your medical team? in the forum Diagnosis Information and General Questions 1 month, 3 weeks ago
https://www.nejm.org/doi/full/10.1056/nejmoa1916945
This NEJM article on the sodium phenylbutyrate–taurursodiol drug is very informative. Table 2 states:
mean difference in ALSF_R = 2.32 for 6 months, 95% CI = 0.18, 4.47, P = 0.03
So there’s the apples to apples comparison. The Edaravone study produced statistically more significant re…[Read more]
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Reese replied to the topic What questions do you have for your medical team? in the forum Diagnosis Information and General Questions 1 month, 3 weeks ago
I stopped taking Relyvrio too, due to headaches and extreme fatigue with only taking 1 package per day. I’ve been trying to research the efficacy of Relyvrio vs. Radicava because I want to know the possible impact of not taking Relyvrio. My medical team are not statisticians so they can’t answer this question. Relyvrio has presented thei…[Read more]
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Reese replied to the topic What aspect of ALS has surprised you the most? in the forum Living With ALS 1 month, 3 weeks ago
After my diagnosis in July 2022, I keep pushing myself in the gym even though I was advised not to do that – “exercise just hard enough to have a conversation” is what I was told, but I ignored this advice. I always gasped for air afterwards, felt good. I set a PR for my 60’s on the rowing machine after diagnosis, but now I really regret doing t…[Read more]
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Reese changed their profile picture 2 months, 1 week ago
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Reese became a registered member 2 months, 1 week ago
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Hello Reese,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Hello Reese,
Welcome to the forum! I am one of the forum moderators as well as 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…[Read more]
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