Jean-Pierre Le Rouzic

I wonder if there are accompanying lesions, like in lichen planus, a chronic inflammatory condition?

Thanks Beth!

I found with some difficulty literature about this trial, it seems there were many unwanted side effects including severe weight loss (one of the worst things to inflict on an ALS patient) and severe cough. And as you said the primary and secondary goals were not met.

Hi Beth,

Please could you share which drug trial it was?

Thanks!

Jean-Pierre

> My right arm and bicep have hurt plus swollen before officially diagnosed

It looks like inflammation?

> but never explored as upper motor neurons are only responding on EMG?

What do you mean? EMG is about detecting skin surface electric activity of muscles. So IMO inferring status of lower and especially motor neurons is as reliable as doing…[Read more]

I completely agree with the previous comments:
– Nutrition is for me the most important aspect as ALS patients need more calories and protein intake than healthy people as shown by Kasarskis and al. in 2014. Plus half of ALS patients have insulin resistance as Alzheimer patients, it can’t be a random coincidence.
– Muscle wasting is nearly ignored…[Read more]

The business actors in the field of drugs are much more diverse than “companies”.
– Investors are making long term financial bets, one on five success and they would be satisfied. They are prey for biotechs. Investors do not need patents.

– Biotechs are bets on one or several drugs on which they have IP, i.e. patents. God knows where they find…[Read more]

Yes indeed.
This publication states 56% of people with ALS experience pain:

doi: 10.3390/jcm11040944.
Pain-Related Coping Behavior in ALS:
The Interplay between Maladaptive Coping, the Patient’s Affective State and Pain
Ina Schlichte, Susanne Petri, Reinhard Dengler, Thomas Meyer, Aiden Haghikia, Stefan Vielhaber, Susanne…[Read more]

I am not sure why ALS specialists would make such a blanket statement as “ALS is a painless condition”

Because it’s supposed to be a disease affecting only motor neurons. Motor neurons do not convey sensory information at all, that’s the specific function of sensory neurons.
Motor neurons send information from the motor areas in the brain to the…[Read more]

> I have been told multiple times by a Neuromuscular specialist that MND are painless.

The two people in my family who had ALS did not complain of pain, but maybe that still had pain.

I think neurologists tell that ALS is painless because the current definition of MND is (obviously) about dysfunctional motor neurons.

My personal opinion is…[Read more]

It seems to me that “Target ALS” is one of the few ALS organizations that does not claim any intellectual property over the research it funds.

It’s a beautiful writing, Duanne.

> He clearly had not heard of bulbar-onset

> The EMG is a faulty test, only as good as the provider. I can’t recall the precise article.

It could be for example:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8596501/

Where they tell:

Nonetheless, not all neurologists correctly diagnosed ALS patients at first evaluation (55%), even if an EMG was r…

[Read more]

Hi NJGuy,

> a drug Aduhelm which is a new drug for Alzheimer and it addresses the same issue of dissolving amyloid in brain. Can this not be used for treating pALS?

As far I understand it, it is not the same issue. Nobody knows the cause of Alzheimer’s disease and there are two main competing hypotheses:
– It’s a buildup of extracellular…[Read more]

> Has anybody thought of Chemotherapy?
This is the thread of people playing with fire? 😉

It seems to me that the challenge in ALS is to keep nerves cells (CNS + PNS) alive as long as possible.

Chemotherapy has a strong effect on cells like astrocytes (it kills them) without which neurons dies. This has even a name “the chemofog”. Look at…[Read more]

> immunosuppressant drugs … under some doctor’s observation
Immunology is thought as one of the most complex domains in medicine.

On other forums there are stories of some people who succeeded partially with similar/opposite (IVIG) approaches, but I guess they were misdiagnosed. There are also stories of people who tried and failed to e…[Read more]

> This link tells that a new clinical trial is starting, it does not tell it is stopped?

> C9ORF72 study was rejected by the ethics commission in Germany.
Which study?
Do you have a link or a clinical trial number?

Otherwise my feeling is that a quiet life, without drugs/alcohol/intense sports with good organic food and a good diet (pALS need much more energy while they are still able to move), is probably something which makes sense.