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Shawn

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@shawn

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  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 2 months, 3 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 2 months, 4 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Rare Diseases – If Patents Were Greater Than 20 Years in the forum Research Topics 3 months 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 3 months, 2 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 3 months, 2 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic ALS and Pain in the forum Living With ALS 3 months, 2 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic What's the latest news on AMX0035? in the forum Research Topics 4 months, 1 week 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.

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic started the topic ALS, stress response and Inflectis' new drug. in the forum Research Topics 4 months, 2 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic CLENBUTEROL in the forum Research Topics 4 months, 2 weeks ago

    It’s a beautiful writing, Duanne.

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 5 months, 3 weeks 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…

    [Read more]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Breakthrough discovery to reverse ALS at Tel Aviv University – Misfolding TDP43 in the forum Research Topics 6 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 7 months, 3 weeks 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 8 months, 1 week 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]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic ALS C9ORF72 in the forum Research Topics 9 months, 1 week ago

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

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic ALS C9ORF72 in the forum Research Topics 9 months, 1 week 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.

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 9 months, 2 weeks ago

    > saw the cholesterol on border line and he told me to be careful
    How strange, cholesterol constitutes a large share of brain’s chemicals, as cholesterol is an essential lipid component of myelin.
    Moreover cholesterol synthesis decreases with age.

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 9 months, 4 weeks ago

    > I ask are Biogem going to continue the monthly doses of Tofersen just a yes or no answer please

    Sorry I have no special information other than what was posted in Biogen and Ionis’ public statement.

    However they say: “Given the high unmet medical need, Biogen will expand its ongoing early access program (EAP) to the broader SOD1-ALS…[Read more]

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 10 months ago

    The results are disappointing to say the least.
    You can find my (angry) analysis on my blog:
    padiracinnovation.org/News/2021/10/disappointing-results-from-the-valor-study-on-tofersen-biib067

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 10 months ago

    > They advised against taking many supplements because they suppress appetite
    Thanks for the information, I didn’t know that. It’s very important indeed.
    Losing appetite is perhaps the worst thing that could happen to pALS, because they need more calories than a healthy person (at least when mobility is not lost)

  • Profile picture of Jean-Pierre Le Rouzic

    Jean-Pierre Le Rouzic replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 10 months ago

    Many thanks Mark!

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