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Jean-Pierre Le Rouzic replied to the topic Burning Sensations in the forum Living With ALS 7 months, 1 week ago
I wonder if there are accompanying lesions, like in lichen planus, a chronic inflammatory condition?
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Jean-Pierre Le Rouzic replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 8 months ago
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.
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Jean-Pierre Le Rouzic replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 8 months ago
Hi Beth,
Please could you share which drug trial it was?
Thanks!
Jean-Pierre
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Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 1 year ago
> 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]
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Jean-Pierre Le Rouzic replied to the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 1 year ago
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] -
Jean-Pierre Le Rouzic replied to the topic Rare Diseases – If Patents Were Greater Than 20 Years in the forum Research Topics 1 year ago
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]
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Susan and
Jean-Pierre Le Rouzic are now friends 1 year ago
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Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 1 year, 1 month ago
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] -
Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 1 year, 1 month ago
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] -
Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 1 year, 1 month ago
> 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]
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Jean-Pierre Le Rouzic replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 year, 1 month ago
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.
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Jean-Pierre Le Rouzic started the topic ALS, stress response and Inflectis' new drug. in the forum Research Topics 1 year, 1 month ago
A few years ago there was a phase II of Guanabenz in Italy. Guanabenz is a drug used to treat hypertension.
The results indicated that this drug was roughly as effective as AMX0035 from Amylyx.
Yet at the dose tested, this drug was unsafe on the long term so a new version was designed: Sephin 1.
This new drug will be tested in a few months in…[Read more] -
Duane and
Jean-Pierre Le Rouzic are now friends 1 year, 1 month ago
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Jean-Pierre Le Rouzic replied to the topic CLENBUTEROL in the forum Research Topics 1 year, 1 month ago
It’s a beautiful writing, Duanne.
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Jean-Pierre Le Rouzic replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 1 year, 3 months ago
> 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…
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Jean-Pierre Le Rouzic replied to the topic Breakthrough discovery to reverse ALS at Tel Aviv University – Misfolding TDP43 in the forum Research Topics 1 year, 3 months ago
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] -
Jean-Pierre Le Rouzic replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 1 year, 5 months ago
> 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]
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Jean-Pierre Le Rouzic replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 1 year, 5 months ago
> 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]
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Jean-Pierre Le Rouzic replied to the topic ALS C9ORF72 in the forum Research Topics 1 year, 6 months ago
> This link tells that a new clinical trial is starting, it does not tell it is stopped?
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Jean-Pierre Le Rouzic replied to the topic ALS C9ORF72 in the forum Research Topics 1 year, 6 months ago
> 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.
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