Dr. Caroline McHutchison is a neuropsychologist and CReATe Clinical Research Scholar at the University of Edinburgh and Dr. Michael Benatar is a professor of neurology and chief of the Neuromuscular Division and executive director of the ALS Center at the University of Miami. They will be discussing their recent publication “Temporal course of cognitive and behavioural changes in motor neuron diseases”.

Published: 2024-02-15 

#als, #c9orf, #ftd, #cognition, #mnd, #health, #neurology, #research, #science

Dr. Chad Heatwole is a Professor of Neurology and the Director of the Center for Health and Technology at the University of Rochester Medical Center and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “The amyotrophic lateral sclerosis-health index (ALS-HI): development and evaluation of a novel outcome measure” and its role as a patient reported outcome measure for ALS.

Published: 2024-01-03 12:30:18

#als, #als-hi, #diseaseburden, #health, #neurology, #patientreportedoutcome, #pro, #research, #science

Dr. Martin Turner is a professor of clinical neurology & neurosciences at the University of Oxford and Dr. Michael Benatar is a professor of neurology and chief of the Neuromuscular Division and executive director of the ALS Center at the University of Miami. They will be discussing their recent publication “Neurofilament light chain in drug development for amyotrophic lateral sclerosis: a critical appraisal”, and the potential role of NfL as a biomarker for ALS. This is part II of a two part series.

Published: 2023-06-12

#als, #biomarker, #health, #neurofilamentlightchain, #neurology, #nfl, #research, #science, #therapy

Dr. Martin Turner is a professor of clinical neurology & neurosciences at the University of Oxford and Dr. Michael Benatar is a professor of neurology and chief of the Neuromuscular Division and executive director of the ALS Center at the University of Miami. They will be discussing their recent publication “Neurofilament light chain in drug development for amyotrophic lateral sclerosis: a critical appraisal”, and the potential role of NfL as a biomarker for ALS. This is part I of a two part series.

Published: 2023-06-12

#als, #biomarker, #health, #neurofilamentlightchain, #neurology, #nfl, #research, #science, #therapy

Dr. Jim Caress is a professor of neurology at Wake Forest University and Dr. Michael Benatar is a professor of neurology and chief of the Neuromuscular Division and executive director of the ALS Center at the University of Miami. They will be discussing their recent publication titled “Harnessing the power of the electronic health record for ALS research and quality improvement: CReATe CAPTURE-ALS and the ALS Toolkit”.

Published: 2023-01-05

#als, #health, #clinic, #ehr, #neurology, #research, #science

Dr. Mary-Louise Rogers is an associate professor at the College of Medicine and Public Health at Flinders University and Dr. Michael Benatar is a professor of neurology and chief of the Neuromuscular Division and executive director of the ALS Center at the University of Miami. They will be discussing their recent publication titled “Urinary neopterin: A novel biomarker of disease progression in amyotrophic lateral sclerosis,” which discusses the importance of biomarkers in ALS.

Published: 2022-09-07

#als, #health, #biomarkers, #neopterin, #pharmacodynamic, #proinflammatory, #neurology, #urine, #research, #science

Dr. Marc Weisskopf is the Cecil K. and Philip Drinker Professor of Environmental Epidemiology and Physiology at Harvard T. H. Chan School of Public Health. In this interview, he discusses his recent publication titled “Occupational lead exposure and survival with amyotrophic lateral sclerosis,” which discusses the role that environmental risk factors could play in ALS.

Published: 2022-08-17

#als, #health, #biomarkers, #epidemiology, #job-exposure, #lead, #neurology, #research, #science

Dr. Melissa Nel is a research fellow, and Dr. Jeannine Heckmann a professor of neurology, both at the University of Cape Town in South Africa. In this interview, they discuss their recent publication titled “Revealing the Mutational Spectrum in South Africans with Amyotrophic Lateral Sclerosis” which highlights that ALS patients of African genetic ancestry should be included in large-scale ALS gene discovery efforts.

Published: 2022-07-01 24:33

#als, #health, #gene-discovery, #genetics, #africans, #research, #science

Dr. Michael Benatar is the Walter Bradley Chair in ALS Research, a professor of neurology at the University of Miami Miller School of Medicine and the principal investigator of the CReATe Consortium. In this interview, he will discuss the CReATe Consortium’s recent paper titled "Validation of serum neurofilaments as prognostic and potential pharmacodynamic biomarkers for ALS". The interview highlights the specific ways in which validated biomarkers could benefit therapeutic development for ALS.

Published: 2021-12-22 16:03:29

#als, #biomarker, #health, #neurofilament, #neurology, #pharmacodynamic, #research, #science

Dr. Corey McMillan is an associate professor of neurology at the University of Pennsylvania and this interview will be discussing his recent paper titled “Machine learning suggests polygenic risk for cognitive dysfunction in amyotrophic lateral sclerosis (ALS)” which discusses the contribution of genetics to heterogeneity we observe in ALS.

Published: 2021-11-05 12:45:19

#als, #cognition, #ftd, #health, #neurology, #research, #science

Dr. Benjamin Murdock is a research assistant professor of neurology at the University of Michigan and this interview will be discussing his recent paper titled “NK Cells associated with ALS in a sex- and age-dependent manner” which further expands his ongoing research examining the impact of sex and age on immune mechanisms in ALS.

Published: 2021-10-04 17:48:18

#als, #health, #immunotherapy, #neurology, #research, #science

Insulin is a hormone most commonly used to lower blood sugar in people with diabetes. Here we talk about some theoretical ways it might help help people with ALS, as well as the lack of convincing case reports or trials and the risks.

Published: 2024-10-01 10:00:00

#als, #caregiver, #health, #alternativetherapy, #insulin, #neurology, #patient, #mnd, #science

Caffeine is a chemical most of us ingest every day. In addition to its stimulant properties, there are some theoretical ways it could help slow ALS progression. Here we discuss the contradictory pre-clinical models and the lack of a convincing relationship between caffeine intake and ALS progression in natural history studies.

Published: 2024-09-05 11:00:00

#als, #caregiver, #health, #alternativetherapy, #caffeine, #neurology, #patient, #mnd, #science

Sodium chlorite is an experimental drug targeting macrophage activation. It exists in different formulations. An oral formulation has potentially deadly side effects. An IV formulation called NP001 has been in recent trials targeting a subset of people with ALS. Here we review the interesting development of this product and where we expect that to go in the near future.

Published: 2023-1-15 00:11:00

#als, #caregiver, #health, #alternativetherapy, #mnd, #neurology, #patient, #np001, #science, #sodiumchlorite

Rituximab is an intravenous product that reduces B lymphocytes. It can help improve strength in patients with myasthenia gravis and multi-focal motor neuropathy, neuromuscular diseases that are caused by circulating antibodies made by B lymphocytes. In this podcast we examine the possible use of rituximab to treat patients with ALS.

Published: 2023-10-09 15:07:48

#als, #caregiver, #health, #alternatetherapy, #mnd, #neurology, #patient, #rituximab, #science,

Ozone is an oxidizing agent which has some surprisingly plausible mechanisms by which it could influence ALS progression. It can also be dangerous. The FDA has warned against using it as a treatment for any disease. Further studies are needed to determine whether there is any dose or route of administration that might be safe and effective for use in people with ALS.

Published: 2023-09-05 11:00:25

#als, #caregiver, #health, #mnd, #neurology, #patients, #research, #science, #alternatetherapy

Astaxanthin is a naturally occurring chemical which has plausible mechanisms for treating ALS and appears reasonably safe and well tolerated in non-ALS trials. We look forward to ALS-specific trials planned later this year which should shed important light on whether this is specifically safe for people with ALS, and whether it really can slow ALS progression.

Published: 2023-08-08 11:43:48

#als, #caregiver, #health, #astaxanthin, #mnd, #neurology, #patients, #neurodegeneration, #science

There is a theorized association between mycobateria and ALS, and two published case reports describe improvements in ALS-like conditions (both with atypical features) after treatment with antimycobaterial antibiotics. Here we review these in detail and discuss our thoughts on how they might change our approach in certain patients in the future.

#als, #caregiver, #health, #antimycobacteria, #mnd, #neurology, #patients, #mycobacterium, #science, #paratuberculosis

Corticosteroids are a class of medications with well-studied effects on the immune system and some people living with ALS have reported benefits from them online. Here we review the pre-clinical and clinical data. We conclude that there is currently no clear evidence that steroids can slow ALS progression, and they can have many side effects.

Published: 2023-04-03

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #corticosteroids, #glucocorticoids, #steroids

Butyrates have plausible mechanisms for slowing ALS progression and positive pre-clinical studies. One trial suggests that sodium phenylbutyrate (NaPB) in combination with Tauroursodeoxycholic acid (TUDCA) can slow ALS progression and prolong survival, but the specific contribution of NaPB toward this effect is unclear. Butyrates appear reasonably safe for use in humans. Based on the above information, we support a trial of a butyrate in PALS, but we cannot yet recommend one as a treatment.

Published: 2023-03-23

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #butyrates, #napb, #sodiumphenylbutyrate, #tauroursodeoxycholid, #tudca

Methylcobalamin is a specific precursor to B12 (cobalamin). It has promising mechanisms by which it could slow ALS progression. Two trials done in Japan suggest that 50mg via intramuscular injection twice weekly can slow ALS progression and prolong survival. Here we discuss the evidence for ultra-high dose methylcobalamin in patients with ALS and conclude that it may offer benefit, but only if administered within the first year of symptoms. If started after the first year, there is no evidence of benefit. It appears reasonably safe.

Published: 2023-02-08

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #b12, #methylcobalamin

Vitamin C is a very popular supplement in people living with ALS, perhaps due to its antioxidant mechanism, low cost, and low risk. Here we review the data on Vitamin C in ALS in hopes of helping patients make more informed decisions about it.

Published: 2022-06-01

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #supplement, #vitaminc, #treatment

Melatonin is a naturally occurring hormone, and it is commonly taken as a supplement to induce sleep. Here we review some surprising mechanisms, pre-clinical data and case reports supporting its potential as an ALS treatment.

Published: 2022-05-03

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #melatonin, #treatment

Light therapy has surprisingly plausible mechanisms through which it could influence the progression of ALS. Here we describe these, as well as some limited pre-clinical and clinical data, and information about dosing, risks, and costs.

Published: 2022-04-01

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #transcutaneous, #treatment

Ketogenic diets, resulting in the formation of ketone bodies, have long been used to promote weight loss and to treat refractory epilepsy. Here we summarize the available data on ketogenic diets as a treatment for ALS.

Published: 2022-03-03

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #supplement, #ketogenic, #treatment

Tamoxifen is an FDA approved estrogen receptor modulator that is currently prescribed to treat breast cancer. Here we review surprising evidence that it could someday be an ALS treatment, including its mechanisms of action, pre-clinical data, cases, trials, and risks.

Published: 2021-07-06 20:06:39

#als, #caregivers, #health, #mnd, #neurology, #patient, #science, #supplement, #tamoxifen, #treatment

Spirulina, or blue green algae, is a supplement that is claimed to have antioxidant and anti-inflammatory properties. Here we review the problems we found with the single relevant preclinical ALS study, and some surprising real and potential risks associated with this product.

Published: 2021-06-08 15:00:25

#algae, #als, #caregivers, #health, #mnd, #neurology, #patient, #science, #spirulina, #supplement, #treatment

Lutimax is a supplement containing Luteolin, a flavonoid that has antioxidant, anti-inflammatory and neuroprotective mechanisms. Here we review case reports and a small trial claiming benefits in people with ALS.

Published: 2021-05-21 19:24:53

#als, #caregivers, #health, #lutimax, #mnd, #neurology, #patient, #treatment

Bee Venom contains substances that could plausibly affect the rate of ALS progression, and there are some positive (though flawed) preclinical studies and case reports associated with it. Since it has some potentially severe side effects and has not been tested in an ALS trial, our group advised against using it to try and slow ALS progression.

Published: 2021-04-29 16:58:40

#als, #bee, #brain, #caregivers, #cure, #health, #medicine, #mnd, #neurology, #patient, #science, #treatment, #venom

Vinpocetine is a prescription drug in many countries and is used to treat patients with stroke and memory loss (though meta-analyses have questioned its benefit in these populations). In the USA, it is sold as a nutritional supplement. Here we review the potential mechanisms, data from pre-clinical models, case reports, and a trial, and the safety of vinpocetine as an ALS treatment.

Published: 2021-01-25 13:58:51

#als, #brain, #caregiver, #health, #mnd, #neurology, #patient, #science, #treatment, #vinpocetine

Apoaequorin (also called Prevagen) is a calcium-binding protein first isolated from jellyfish. Here we review the theory and the single trial of this compound for treating ALS.

Published: 2021-01-07 16:10:11

#als, #apoaequorin, #brain, #caregiver, #health, #mnd, #neurology, #patient, #prevagen, #science, #therapy, #treatment

Azathioprine is an immunosuppressant drug. Here we review the mechanisms by which it could slow ALS progression, discuss the ALS reversals and the negative ALS trials associated with this drug, and highlight some of the serious side effects that can occur in patients taking it.

Published: 2020-12-17 18:54:22

#als, #azathioprine, #brain, #caregiver, #disease, #health, #mnd, #neurology, #patient, #science, #treatment

Accilion is a topical mineral cream. Here we discuss why we do not think it has a plausible mechanism of action for treating ALS. We also point out the problems interpreting the one anecdotal report of improvement in ALS symptoms associated with this treatment.

Published: 2020-11-30 18:29:02

#accilion, #als, #caregiver, #disease, #health, #mnd, #neurology, #patient, #science, #treatment

Vitamin E is one of the most popular, and most thoroughly studied, supplements in patients with ALS. Although it is inexpensive and safe, well-designed trials have failed to find evidence that it can slow, stop, or reverse ALS progression. Interestingly, some data suggest that long-term use of vitamin E might decrease a person's risk of getting ALS.

Published: 2020-10-05 14:13:27

#als, #caregiver, #disease, #health, #mnd, #patient, #science, #supplement, #treatment, #vitamin

Leap2Bfit is a combination of many ingredients. The exact amount of each ingredient is not clear. While some of these products have plausible mechanisms and preclinical studies supporting their use in ALS, others do not. There are 3 "ALS reversals" associated with this product, but these may have different explanations. Several other patients under the care of ALS Untangled investigators have derived no clear benefit from this product. There can be serious risks associated with some of the ingredients in this product.

Published: 2020-09-17 17:37:16

#als, #caregiver, #disease, #health, #leap2bfit, #medicine, #mnd, #neurology, #patient, #science, #treatment

Ursodiol or ursodeoxycholic acid (UDCA) is a bile acid derivative of cholesterol. Since it can have antioxidant, anti-inflammatory and anti-apoptotic effects, it has mechanisms by which it could slow ALS progression. Here we discuss trials of UDCA in PALS, including the taurine-conjugated form (TUDCA). Some of these trials came out after our ALS Untangled review, and have changed our opinion about UDCA as an ALS treatment.

Published: 2020-08-22 13:42:14

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #science, #treatment, #ursodiol

Propofol is an intravenous drug used for general anesthesia. Some people with ALS have reported benefits from this drug. Here we explore the rationale, the cases we found objective data on, and the serious risks of propofol as an ALS treatment.

Published: 2020-08-03 15:49:12

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #propofol, #science, #treatment

Carnitines are inexpensive, generally safe forms of amino acids. There are several mechanisms by which different carnitines might theoretically be helpful to a person with ALS. A flawed Italian trial suggested that acetyl-L-carnitine could slow ALS progression. Here we examine carnitines in more detail in hopes of helping patients with ALS make more informed decisions about them.

Published: 2020-07-10 21:32:53

#als, #aminoacid, #caregiver, #carnitine, #health, #medicine, #mnd, #neurology, #patients, #science, #treatment

Gluten is a protein found in breads and cereals. In a small percentage of people, ingestion of gluten can trigger an autoimmune disease. Here we review the evidence that gluten-induced autoimmunity can mimic ALS, as well as the pros and cons of a gluten-free diet for people with ALS.

Published: 2020-06-04 03:53:57

#als, #caregiver, #diet, #gluten, #health, #medicine, #mnd, #neurology, #patients, #treatment

It is clear that oxidative stress is occurring in the brains and spinal cords of patients with ALS. The mitochondria are a major source and target of this oxidative stress. Here we describe an antioxidant that specifically targets mitochondria called MitoQ.

Published: 2020-05-27 19:44:27

#als, #caregiver, #diet, #gluten, #health, #medicine, #mnd, #neurology, #patients, #treatment

There is increasing evidence that the microbiome (the family of organisms that live in our guts) may play a role in driving ALS progression. Here we review the evidence behind that idea, and explore fecal transplants as one potential way to alter the microbiome.

Published: 2020-05-27 19:44:18

#als, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

This is a list of a dozen things to watch out for when considering an alternative or off label treatment being advertised on the Internet. These things tend to be associated with some of the less promising treatments that ALS Untangled has reviewed over the past 11 years. The more of these things one finds associated with a product, the more wary we think they should be about it.

Published: 2020-05-27 19:44:05

#als, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

Glutathione is one of the major antioxidants in all our cells. It is also one of the most popular supplements taken by patients with ALS around the world. Here we review what we learned about the mechanisms of action, pre-clinical data, case reports, trials and risks of taking glutathione for ALS.

Published: 2020-02-28 16:22:45

#als, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

Many patients with ALS have low vitamin D levels. Here we discuss ways that vitamin D might be important in slowing ALS progression, and in reducing the risk of bone fractures from falls. We explain why we think it is important for patients with ALS to have their vitamin D levels checked, and if these levels are low, to get them into the normal range.

Published: 2020-02-07 15:41:40

#als, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment, #vitamin

In the 1930s, Royal Raymond Rife developed special microscopes he claimed he could visualize living microorganisms, including viruses too small to be seen with any other existing technology, via the color of auras emitted as they vibrated. He also claimed to have developed a machine that used radio waves to kill these organisms. While the use of radio waves to treat disease (a field called "radionics") has been debunked by scientists, it turns out that tiny organisms called retroviruses may actually play a role in causing some cases of ALS.

Published: 2020-02-07 15:41:35

#als, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #retrovirus, #science, #treatment

Here we review an online manuscript called “When ALS is Lyme.” As in our previous ALS Untangled review, our large international team of clinicians and scientists again finds no convincing scientific evidence for a connection between Lyme disease and ALS.

Published: 2019-11-13 16:28:13

#als, #caregiver, #disease, #health, #lyme, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

Hyperbaric oxygen can increase heat shock proteins, which might be useful in decreasing oxidative stress and protein aggregation in ALS. It looked promising in animal models of ALS, and is associated with 1 validated case of “ALS reversal.” Unfortunately a clinical trial in patients with ALS showed no benefit and this can cause serious side effects.

Published: 2019-11-13 16:28:10

#als, #caregiver, #disease, #health, #hyperbaric, #medicine, #mnd, #neurology, #oxygen, #patient, #research, #science, #treatment

Ayahuasca is a hallucinogen used in religious rituals in the Amazon. This podcast reviews the potential mechanisms by which it might slow the progression of ALS, as well as a few case reports suggesting benefit. Unfortunately we learned this product can cause death and/or hospitalization.

Published: 2019-11-13 16:28:05

#als, #ayahuasca, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

One group has reported evidence of fungal infections in the brains of patients who died from ALS. Here we explore the potential explanations for this finding, and the potential for anti-fungal medications as an ALS treatment.

Published: 2019-11-13 16:28:01

#

als, #antifungal, #caregiver, #disease, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

Resveratrol is a naturally occurring chemical found in grapes, berries and peanuts. By modulating sirtuins, protein aggregation and the gut microbiome, it could theoretically slow ALS progression. We describe an animal study and an "ALS Reversal" that provide some support for this idea.

Published: 2019-07-17 16:19:43

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #research, #resveratrol, #science, #treatment

Oxidative stress is widely believed to be one of the molecular pathways driving ALS progression. Many different antioxidants have been tried in people with ALS, with little or no previous benefit. RT001 fights oxidative stress in a unique way. Here we show why this might be more effective than other antioxidants and review some very early data from the RT001 expanded access program.

Published: 2019-07-17 16:19:40

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #research, #rt001, #science, #treatment

Penicillin G is an antibiotic and hydrocortisone is an anti-inflammatory. These 2 drugs have been successfully used in combination to treat cases of syphilis mimicking ALS. Here we show 1 person's theory on why they could help people with ALS who do not have syphilis, and critique some of his case reports.

Published: 2019-07-17 16:19:36

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

Perampanel (also called Fycompa) is a drug used to treat epileptic seizures. Here we review the reasons it might be useful in slowing ALS progression and describe what happened when ALS mice and a small number of people with ALS were treated with this and similar drugs. We describe the ongoing ALS trials and review safety and dosing considerations.

Published: 2019-07-17 16:19:31

#als, #caregiver, #drug, #health, #medicine, #mnd, #neurology, #patient, #perampanel, #research, #science, #seizure, #treatment

Acupuncture is often thought of as a treatment option for pain. In this podcast we look critically at whether acupuncture might have mechanisms that could slow ALS progression, and we review published trials of acupuncture in patients with ALS.

Published: 2018-12-20 12:51:46

#acupuncture, #als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Low dose naltrexone (LDN) has been proposed as a treatment for a long list of different diseases. Here we examine the potential mechanisms, pre-clinical data and anecdotal reports on LDN in ALS.

Published: 2018-12-20 12:51:43

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Many patients over the years have told us that forms of cannabis can help bothersome ALS symptoms such as pain, cramps, fasciculations, and low appetite. Here we review theoretical, pre-clinical and anecdotal evidence that forms of cannabis might slow the progression of ALS.

Published: 2018-12-20 12:51:38

#als, #cannabis, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Several observations suggest that retroviruses might be able to kill motor neurons, causing forms of ALS. Here we review these data, focusing on the theory that reactivation of an "endogenous" retrovirus we all have hiding in our genes called Herv-K might cause some cases of sporadic ALS. We examine drugs that attack retroviruses as potential treatments for patients with ALS.

Published: 2018-12-20 12:51:32

#als, #antiretrovirals, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

With more than 30,000 downloads, this remains our most popular ALS Untangled review of all time. Here we review the history and evolution of this cocktail, including what has been learned about it since we published our review. We highlight the problems with interpreting unverified anecdotal data in ALS.

Published: 2018-06-12 14:39:32

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Protandim is an oral tablet derived from 5 different plants, which may be able to activate an antioxidant pathway in cells. This treatment is also associated with an “ALS reversal,” appears reasonably safe and inexpensive, and warrants further study in people with ALS.

Published: 2018-06-12 14:38:34

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Lunasin, a peptide first isolated from soybeans, is associated with an “ALS reversal.” We explain why we once had great hope for this as an ALS treatment. We then review the results from a recently-completed, year-long clinical trial of Lunasin in 50 people with ALS. Unfortunately, no one in this trial had an ALS reversal or even any detectable slowing of their progression, and there were unexpected GI side effects including constipation severe enough to warrant hospitalization.

Published: 2018-06-12 14:37:48

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

Once ingested, coconut oil gets converted to ketone bodies which might be able to help central nervous system cells produce more normal levels of energy, and be more resistant to ALS. Here we discuss the potential utility of coconut oil and other ways to elevate ketone bodies in the treatment of ALS, including an upcoming trial of Triheptanoin.

Published: 2018-06-12 14:37:03

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #research, #science, #treatment

BMAA is a toxin that may cause some forms of sporadic ALS. Here we discuss how L-serine, an inexpensive, widely available amino acid supplement, might block BMAA toxicity and thus be of use for preventing or slowing ALS progression.

Published: 2018-04-13 17:38:57

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #patients, #research, #science, #treatment

Acuscope is a machine that delivers a very small amount of electric current to muscles. In this podcast we report that acuscope treatment appears fairly safe, but is expensive and has shown no clear benefit in slowing ALS.

Published: 2018-04-13 17:38:53

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patient, #patients, #research, #science, #treatment

Curcumin is an ingredient in the spice tumeric and in curry powder. It has multiple plausible mechanisms by which it might slow ALS progression. There are 3 people with validated ALS diagnoses who recovered significant lost motor function (ALS reversals) on forms of it. Here we discuss the specific curcumin formulation and dosage that we think is promising enough to warrant further study in ALS.

Published: 2018-04-13 17:38:43

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Inosine is a naturally occurring oral supplement that raises blood urate levels. In this podcast, we discuss ways this might slow ALS progression and why it needs careful blood and urine monitoring.

Published: 2018-04-13 17:38:35

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

CuATSM is a very promising ALS treatment that is in development. Here we discuss copper metabolism in ALS, why this specific therapy might help and why less complicated copper supplements are unlikely to be of any benefit.

Published: 2018-03-07 15:08:08

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

Basis in an over the counter supplement containing nicotinamide ribose and pterostilbene. In this podcast, we review the theories on how this might help a person with ALS, as well as the potential risks and costs involved.

Published: 2018-03-07 15:08:01

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

In this podcast, we discuss one of the most requested ALS Untangled reviews of all time-a complicated treatment cocktail described in a book written by a patient with slowly progressive ALS called "Eric is Winning."

Published: 2018-03-07 15:07:55

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment

ALS Untangled is an internet based program that reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them. This podcast describes how the program works.

Published: 2018-03-07 15:07:48

#als, #caregiver, #health, #medicine, #mnd, #neurology, #patients, #research, #science, #treatment