[lee]

I am taking Radicava ORS (and the IV version before that), Riluzole, and Relyvrio, and my progression has been “slower than expected.” However, if the only information we have is the rate of progression, there is absolutely no way to know if any medication is doing any given individual any good. If we could look at what is going on in individual cells, then perhaps we could know, but we do not have that information now. All we know at present about any of these medications is that they have some effect on the average rate of progression. I am not an expert in ALS, but I am a statistician and scientist with a Ph.D. from Harvard. My strong recommendation is to take the available medications unless there are side effects or something similar that outweigh the possible benefits.

[lee]

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.

[lee]

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 going through. I get that a lot. I can still use my arms and legs pretty well, and so I don’t “look like” I have ALS.  A big issue for me is extreme fatigue, and if I mention that (which I try not to) many people say they are tired too, and that I just shouldn’t worry about it.  I also have trouble chewing and swallowing, and using my hands, and many people say they have those problems sometimes too.

The worst thing said to me was by a woman who was a high school classmate years ago, and asked if I had considered the possibility that ALS was my brain’s way of telling me it wants to commit suicide.

[lee]

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

[lee]

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 hand cramps bother me the most because my fingers just freeze up, and I can’t use my hand for a bit. Usually this goes away in a few seconds. I haven’t dropped anything breakable yet.

I have tried mexiletine (and was part of the clinical trial for that) but it makes me dizzy and I stopped taking it.

My twitching was one of the first things my neurologist noticed when he first examined me before I was diagnosed. I had noticed them but had not paid any attention. I don’t know how long they had been going on.

[lee]

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 muscles get tired and achy. The massages helped a lot with that. I will be glad when I can safely start getting them again. My therapist is open, but since I am 74 and at higher risk and I live with high risk people, I am going to wait a while longer before going back.

[lee]

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. We have a routine and it is no big deal. I also take Riluzole, and Acetyl-L-Carnitine at the recommendation of one of my doctors.

My progression has been slow, and I am still quite functional. I have no idea whether Radicava and the other medications have had any effect on my progression (it is impossible for an individual to know that, which is why we do clinical trials). I have not noticed any side effects. I sometimes get dizzy, but that also happened before Radicava. I would recommend it to others.

 

[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 N-Acetyl L carnitine? Thanks, Lee