@dwrt
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DavidW replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 4 months ago
I am taking both Sodium Phenylbutyrate and Tudca (these are off-label Rx for the components of AMX0035 ). It’s expensive and not covered by health insurers as they are not FDA approved). As it is tax time, do you have any experience with whether the cost can be deducted on one’s US tax return under the criterion: “nutritional supplements pr…[Read more]
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DavidW replied to the topic Work arounds for the bitter taste of phenylbutryate? in the forum Diagnosis Information and General Questions 7 months ago
As a follow-up, I found a less burdensome recipe: small curd cottage cheese. I mix the 3 gm PB with 1/2 of a small carton of cottage cheese (~135 ml). The nice benefit of this monotonous regimen is that you get 13 gram protein twice daily, which makes achieving the protein intake goals easier to achieve. As to the Tudca, maple syrup is the ea…[Read more]
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DavidW started the topic Work arounds for the bitter taste of phenylbutryate? in the forum Diagnosis Information and General Questions 1 year, 1 month ago
hi So here I am, a new ALS (bulbar) patient not likely to do well with capsules and tablets for much longer. And I am now facing the challenge of dissolving and ingesting my PB cocktail twice daily. Please tell me successful tactics for overcoming the challenge of its very bitter taste. Thanks DavidW
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DavidW became a registered member 1 year, 1 month ago
Hello David,
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]
Hellow DavidQ, 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 l…[Read more]
Hello David, 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]