Recent content by Pauliguy

I started a few months after diagnosis due to me spending time researching it. I wish I started the day after diagnosis. I started with a PIC line and now have a port. The biggest hassle is driving to the infusion center twice during the 10-day infusion session to get a needle inserted in the...

I am lucky, I am infusing at home and there is no cost through Kaiser. I am charged $20 for a doctor’s visit, but nothing to go to the infusion center for them to access my port. It seems that since they are both the insurance company and health care provider, I didn’t have to convince them to...

I was having speech problems for over a year before being diagnosed with ALS. I woke up one day in March 2021 with a weak left hand. In May 2021 I was diagnosed with bulbar and classic/spinal ALS. Early on I would choke on my own saliva and would bite my tongue. I have seemed to adapt, I rarely...

Got it, thanks, I never took Latin and didn't recognize sodium to be natrium in Latin

Laurie, I was reporting what I was doing. The title of this form is AMX35. I started off with: To duplicate AMX0035. My understanding is that AMX35 is a compound of Sodium Phenylbutyrate and TUDCA, 6 grams and 2 grams per day respectively. I reread the entries and I do not see anyone asking...

I have Kaiser. Sodium phenylbutyrate comes in pill form, no taste. I buy TUDCA on Amazon, Nutricost powder 25g, and 000 capsules, 2 capsules is 1 gram. If you are taking TUDCA by mouth, try with whole fat plan yogurt. TUDCA tastes horrible. 1

To duplicate AMX0035: Sodium Phenylbutyrate, I take 4 pills, 2 grams, 3 times a day (total 6 grams). They are hard pills and you can chew them if you wish. TUDCA, 2 pills, 1 gram, 2 times a day (total 2 grams). I make my own capsules. If you take this in powder form, whole fat yogurt helps get...

I am duplicating AMX0035 with Sodium Phenylbutyrate and TUDCA. There was some mild discomfort and slightly loose stools. I don't know if it was that combination or the Riluzole which I started taking around the same time. After a month or 2 everything is back to normal, apparently my system...

My first symptoms of ALS were that the vocal cords were not moving on the left side. My speech was slow and measured. Later it showed up as hand weakness on the left side.

Took me about 2 weeks, the hold up was getting a midline (like a picc) which took the 2 weeks to get the appointment. I am getting a port tomorrow.

@Bestfriends14, my doctor prescribed sodium phenylbutyrate, and my copay is $10/month. I understand it can cost between $5,000 and $7,000 a month if not covered by insurance.

My doctor at Kaiser prescribed it for me. There are not many manufactures of it. Par Pharma make what I am taking. Kaiser sometimes has a difficult getting it.

I was diagnosed May 2021. Will start Radicava Aug 30th, 2021 via a PICC line. The first 4 infusions will be at the hospital and at home after that. If I tolerate the Radicava well, I will get a port which to my understanding will allow me to surf and paddle board if I remove the needle to the port.

This touches home for me. When will I want to call it quits, spare love ones, etc. Steven Hawkins had a meaningful life in a wheelchair, but that is not quite me. For me it is when I can no longer perform living in a way that defines me. I wonder if there is a forum on this?

Riluzole 50mg twice daily Curcumin C3 complex 2g twice daily (Costco) that is 8 tabs Ginkgo Biloba twice daily (Costco) TUDCA (tauroursodeoxycholic acid/taurursodiol) 1g twice daily (Nutricost) that is 4 home made tabs Sodium phenylbutyrate 3g twice daily, or 2g three times daily Acetyl...