Reese

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]

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.

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]

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]

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]