@deserthorses
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Patti replied to the topic Sodium phenylbutyrate powder in the forum Living With ALS 6 months, 2 weeks ago
Sodium phenylbutyrate is considered a Tier 5 drug – one with the highest copay.
BCBS losts Tier definitions here: https://www.bcbsm.com/index/health-insurance-help/faqs/plan-types/pharmacy/read-drug-list.htmlMost drug plans follow Medicare and the same process usually applies to Medicare Part D and private plans. From…[Read more]
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Patti replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 8 months ago
My brother, diagnosed earlier this year with bulbar ALS, had a stem cell transplant for multiple myeloma maybe four years ago? I.E, complete eradication of the immune system followed by receiving an autologous bone marrow transplant.
Might this have precipitated the onset of ALS? Or did it slow down the progression?
Rhetorical question.
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Patti replied to the topic Calling all "Foodies" – – do you have recipe/meal suggestions? in the forum A Forum for ALS Caregivers 10 months, 2 weeks ago
When I was home nursing, many of my patients used Schwann’s home delivery. They have pre-made meals and separate items which could easily be combined to make healthy meals. As long as the individual can use a microwave this could be one option – or a back up option. Their prices were “middle” (compared to some delivery services) and the quality…[Read more]
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Patti became a registered member 10 months, 2 weeks ago
Hello Patti,
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]
Hello Patti, 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]