@cynthiam
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Cynthia J Mikesh replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 5 months ago
My husband was diagnosed in Feb. 2022. He started taking the cocktail off-label (SPB/Tudca) in March and he started the Relyvrio RX last month so he has, in essence been on this almost from diagnosis. He started with a score of 48 in Feb. fully functioning. We are almost 1 year from diagnosis and his score is still 48. He also takes Oral…[Read more]
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Cynthia J Mikesh replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 11 months ago
We pay out of pocket for sodium phenylbutyrate. My husband was diagnosed in Feb 2022 and we estimate he is about 2-3 years into the disease. He has been on Tudca & Sodium Phenylbutyrate since late February and has has two ALS team appointments. His disease has not progressed at all in 6 months. He is no different now than he was in February.…[Read more]
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Cynthia J Mikesh became a registered member 11 months, 2 weeks ago
Hello Cynthia,
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 Cynthia,
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]