[Cynthia J Mikesh]

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 Radicava for about 3 months now.  Many other supplements in trials such as high dose oral B12 and another called BASIS by Elysium Health.  Tons of Theracumin.    Other than muscle wasting in his arms (he is a body builder so this is pronounced) he seem to be progressing at a snails pace which is what we all want right?  Next to a cure of course!   As far as the taste goes, yup.. it is horrid.. beyond horrid.  My husband says it tastes like a mixture of salt water and Lysol.  I don’t know why they can’t put it in capsule form like it was when we got it off-label.  I don’t know if his slow progress is due to the drugs or just his natural course, but we are not taking any chances and he will stay on everything we have him on until something even better comes along.  We will not go down without one hell of fight!  My thoughts, prayers and hopes go out to all effected by this nightmare.

[Cynthia J Mikesh]

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. He is still walking/talking/eating and breathing. We do not know if this is just his natural slow progress or the Tudca/PB or any of the multitude of other things I have him on. But I will take no chances. He will stay on the Tudca/PB and if the FDA is so utterly heartless and blind to the enormous outcry of this community to approve this HOPE then yes, I will go to Canada – or the UK or anywhere else on this planet to get it.

And yes, I have added my plea to the FDA. If they do not approve this they should all be completely ashamed of themselves. I hope they never have to endure the pain, fear and hopelessness of the diagnosis they feel ok to say “lets just wait a while longer” If someone they loved had ALS the words “lets wait a while longer for more results” would never be spoken.