Lee

Bevan, I noticed your comment about N-Acetyl L carnitine (1 g 3x a day) and L-Serine (30g a day). Is N-Acetyl L carnitine different from Acetyl L carnitine (without the N-), which I can find in bulk on Amazon. I tried the pills but can’t swallow them anymore. How do you measure 1g or 30g L-Serine? Can you mix L-Serine with one of the doses of…[Read more]

I started taking it 3 days ago. I had been warned about the terrible taste, but it has not been as bad as I had feared. I swallow it quickly and then eat some flavored yogurt, and that seems to clear out the bitter flavor. No bad side effects so far.

I am a PALS, and have had versions of all of those things said to me. I try not to let it bother me too much, because I doubt if I have done any better at times myself. It is hard to know what to say to people facing death.

In some ways the thing that bothers me the most is when people say they have symptoms just like mine so they know what I am…[Read more]

I forgot to add in my previous post that the massages seemed to help with muscle twitching and cramps, at least for a while.

I have constant muscle twitching in many of my muscles, especially my triceps, thighs, calves, and chest. I sometimes have them in my hands and occasionally on the left, lower part of my face. For the most part they don’t bother me, except the ones on my face.

I also have cramps, especially in my feet, legs, and hands, which can be painful. The…[Read more]

Before the pandemic I got regular therapeutic massages once or twice a week, which helped a lot especially with muscle discomfort in my calves and thighs. I was diagnosed 3 years ago, but can still use my arms and legs pretty well. I try to walk twice a day. I used to be able to walk 2-3 miles each time, but am down to about 1 mile, and my leg…[Read more]

I have been on Radicava for over 2 years. I am now in my 30th cycle. I do 10 days of infusions, then 18 days off. That way my wife and I have 18 days to travel or whatever else we want to do. I have a port in my chest, and my wife does the infusions at home. I get the port accessed at the beginning of the 10 days, and then de-accessed at the end.…[Read more]