Duane

Caryl, the issue you describe  “I have a serious lack of energy, being able to only talk or be active for 2 hours and then I’m exhausted.”  would not be related to the disease in my opinion, since that is severe. Yes, people will lose some general energy overall but not what you describe. I can’t say whether the 3 ALS DRUGS you take would have thi…[Read more]

Caryl,  do you take any other meds?  The disease generally does not cause what you are describing. How is your sleep? Do you have sleep apnea?  Probably the ALS DRUGS you are taking wouldn’t cause it from what I have read.  But those combined with others may.  See your Doctor .

Elias,  There will be Phase 3 completion in 2024.  As of now it’s debatable whether it has any efficacy.

“laughter is the best medicine”.  Its true, at least for me it has been.  My symptoms started in 2006 and I was diagnosed in 2012.  I have only been taking Riluzole and a few common supplements.  My overall health is good and the main problem is spasticity from the knees down and very weak ankles.  My advice is to have a positive outlook, keep…[Read more]

I think that considering the price, the least they could do would be to mask the taste of it.

Jennifer that’s good information. I will be starting it soon but since I never take drugs on an empty stomach I will mix it with my Glucerna with water added  and probably have a small amount to eat before taking it.  Hopefully it has some efficacy, the Phoenix trial will shed more light on it.

Yes Amanda, anything that will slow it and of course anything that will stop it entirely. So long as the cure is not worse than the disease. I think it is initially caused by a virus that alters the genes that causes one to be susceptible to the cascade of neuron events that lead to this.

We all want something to address this disease, but I fail to understand what all of the commotion is about. Perhaps it MAY extend life by 6 months but if you are in the advanced stage of ALS you may not want to live longer. It may slow the progression which is good but apparently 6 no’s is meaningful,  at least for me, binding or not.

There is…[Read more]

Kris, here is information that may help you. Although sometimes people progress slowly, sometimes very slowly. There really is no way of knowing how it will effect you until it does.

Stages of ALS

The The ALS Association is a reliable source of information. 

Thank you Jean-Pierre for the compliment!

Lisa, for the first six years with this I sought nothing to do with ALS. I just continued to live the best I could. I have always avoided thinking about it with a few exceptions. I believe avoiding it mentally can only help. I’m in the U.S. and the health system treats you as you WILL BE an invalid soon and will be totally dependent on others for…[Read more]

Lisa, Of course dose and duration are very important factors, but I think that relying on your body to give you a signal is not wise with a toxic compound like this.  What if there is no efficacy but it damages organs and that damage is not known for a few years?  Is it carcinogenic?  And although that article is not recent, it still applies to…[Read more]

Bill, I’d like to know more about your statement “Clenbuterol use although huge drop out rate due to side effects was concerning”. Is there an article explaining this?

People can and do what they want regardless of the risks involved or whether it is trialed adequately. I don’t care what a Neurologist who is popular with the ALS community says about it or a trial in Italy shows unless there are valid trials that are peer reviewed. Here is another article with good information:      ht…[Read more]

Another thing about taking many supplements and meds is what they  may do to your stomach.

Lynn, a lot depends on your husbands condition and level of energy, since a trip like that would be tiring for those who don’t have ALS. Also the benefit of the drug (if any) needs to be weighed.  Many drugs fail  at the third trial, and the few that pass have to go through the process of a final approval.  What does your husband think about it?

All you have to do is read to find out its side effects.