Forum Replies Created
May 22, 2022 at 2:29 am #21995
> 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 astrology.
Did you take a second piece of advice, from a rheumatologist as your right arm and bicep hurt and swell?
May 18, 2022 at 2:27 am #21957
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 by research (~6% of publications) while this is the characteristics which gave its name to ALS (Amyotrophic Sclerosis). I guess that the cellular response to stress plays an important part here.
– An extension of previous point is that I feel that it hurts research to present ALS as a “Motor Neuron Disease”. Many nerve and cellular studies tell that ALS strikes all the body, but if you are a young scientist it is unwise to take this career path, only scientists in sports or nutrition do that kind of studies without career risks, for others it is frown upon because you know “ALS is a Motor Neuron Disease”.
– There is nearly no research on managing the disease, for example in stroke patients there use Pacemakers to stimulate the laryngeal reflex.
Currently I am preparing a large revision of my book on the state of ALS research. It will elaborate on two points:
* One is the failure (Arimoclomol and Biogen/Ionis genetic therapies) or relative success (AMX0035) of recent drugs trials and what it teaches.
* What is NOT studied in ALS research.
May 9, 2022 at 1:16 pm #21922
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 there drugs, but it’s not from basic research. They seek money from investors and hope to have some success, in order to sell themselves to a big company. Biotechs are not the cleanest industry, they buy well known voices like Nobel scientists and even when they fail, they pretend that “on a subset on patients, a statistically strong signal that survival had improved up to 10 months”. It’s well known also that when they meet a failed clinical trial, instead of searching for a better drug, they search to apply their drug on another disease. They need patents, but just because it is a proof they have some assets.
– Universities. They do basic research, they have the goal to teach students, not to heal patients. Sometimes they ask for patents, which their IP department hope to sell to a big company. This never happen, at best it’s a poor biotech which buy a license to the patent, but it’s rare as biotechs are popping in existence from thin air.
– Big companies. They are the fat cats. They either search for low hanging fruits, or to buy either a license to a patent or even a biotech but only if a clinical trial is successful. Sometime they wait for the interesting biotech to go bankrupt. It’s cheaper than buy on successful one. They care much for patents.
So in summary research and patents are disconnected domains.
(I was granted 12 patents)
April 26, 2022 at 1:36 am #21836
> 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 this is just a century old myth: TDP-43 mislocated, misfolded proteins which are present in 95% of sporadic ALS are found in many places in the body.
Plus MRI shows that anomalies in many parts of the brain and spine, not simply in the motor area as the definition of ALS, or the very name of MND imply.
Last: There are many studies discussing ALS starting at the interface between the nerve and the muscle it activates (the neuromuscular junction) and then spreading. This matches well the experience of many patients who had first a “small problem” with one dropping foot or a thumb loosing strength and ulnar muscle mass.
If this is true, most ALS cases are not motor neuron diseases but something like a distal axonopathy. Search for “ALS dying back hypothesis”
April 3, 2022 at 10:13 am #21734
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.
February 18, 2022 at 2:36 am #21508
> 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:
Where they tell:
Nonetheless, not all neurologists correctly diagnosed ALS patients at first evaluation (55%), even if an EMG was requested (75%). Although not systematically investigated, the most common alternative diagnosis in the EMG report was severe root lesion and spinal stenosis, in particular for patients with LL onset and preserved UL, bulbar, and respiratory function.
February 12, 2022 at 1:55 am #21458
> 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 amyloid plaques
– It’s an intracellular buildup of Tau protein.
In ALS there is a buildup of intracellular TDP-43
That said it’s an extreme simplification as there are many other proteins involved in both diseases.
Yet it seems that many scientists and biotechs are working on antibodies or intrabodies (a smaller version of antibodies), so I expect to see good news on the clinical side soon.
December 26, 2021 at 2:20 am #21163
> 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 die. This has even a name “the chemofog”. Look at Wikipedia, there is detailed article on it. It looks to me it’s the last thing an ALS patient would need.
December 10, 2021 at 3:08 am #21119
> immunosuppressant drugs … under some doctor’s observation
Immunology is thought as one of the most complex domains in medicine.
Few specialists/scientists pretend to understand it in the healthy human, so I guess it’s above the head of the average practitioner to apply its knowledge of immunity to ALS.
September 29, 2022 at 3:31 am #22788
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.
September 27, 2022 at 2:11 am #22771
Please could you share which drug trial it was?
April 28, 2022 at 2:34 am #21855
This publication states 56% of people with ALS experience pain:
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 Vogt
April 27, 2022 at 4:06 pm #21852
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 muscles while sensory neurons send information from their extremities to the brain.
Yet for me there is something weird in the statement that ALS affects only motor neurons, because in a PNS nerve there are both motor and sensory neurons, even in the corticospinal or corticobulbar tract there are sensory neurons (~40%).
Given this close proximity, how could a neuron disease affect only one type of neuron and not others? Something similar was already argued by scientists but I can’t remember the reference.
March 30, 2022 at 1:51 pm #21713
It’s a beautiful writing, Duanne.
November 9, 2021 at 1:42 am #20965
> This link tells that a new clinical trial is starting, it does not tell it is stopped?