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Patient case reports

Nuedexta

August 8, 2023

Nuedexta has plausible mechanisms for improving bulbar function in PALS. Some PALS reported concomitant improvement in bulbar function for at least a short period when taking Nuedexta for PBA. A well designed phase II trial in PALS demonstrated the efficacy of Nuedexta in patient-reported bulbar function, and the preliminary result of another trial showed improvement […]

Anti-Mycobacterial Antibiotics

August 3, 2022

There is a theorized association between MAP and ALS, and two published case reports described improvements in ALS like conditions (both with atypical features) after treatment with antimycobacterial antibiotics. Based on these, we believe it would be reasonable to perform chest imaging in PALS who have features of their history or exam that are a […]

Ketogenic Diets

October 21, 2021

Ketogenic diets have plausible mechanisms for treating ALS. One flawed preclinical study and two Patients Like Me participants reported benefits; these were not independently verified. Two other Patients Like Me participants and one patient underthe care of an ALSUntangled investigator did not show benefits. A trial of a ketogenic diet was only able to enroll […]

Azathioprine

August 20, 2020

As an immunosuppressant drug, AZA has a plausible mechanism for slowing the progression of ALS. However, there is no pre-clinical data to support its use and two clinical trials did not support efficacy. There are 2 published cases in whichALS reversals occurred on AZA, but it is not clear to us that the AZA actually […]

Acetyl-L-Carnitine

July 30, 2020

There are good theoretical mechanisms for carnitines, some preclinical evidence for LC and ALCAR, and a single clinical trial that suggested ALCAR could slow disease progression in PALS. All three carnitines appear to be well-tolerated, generally safe, and inexpensive. We believe that there is a need for future clinical trials of carnitines in PALS to […]

Vitamin E

July 29, 2020

Vitamin E (a-tocopherol) is perhaps the most studied supplement in the history of ALS and was taken by one of the most famous ALS patients. Vitamin E has mechanistic potential in ALS as an antioxidant but appears in the SOD1 mutant mouse model to only have an effect on delaying disease onset. This bears out […]

Glutathione

November 29, 2019

As an ALS treatment, glutathione and cysteine-containing supplements that increase glutathione appear reasonably safe, and they have a plausible mechanism, positive preclinical data and 2 interesting case reports. Unfortunately small clinical trials of glutathione itself and of acetylcysteine showed no significant benefit. Given these negative clinical trials, we do not advise PALS to take glutathione […]

Gluten-Free Diet

October 16, 2015

Theoretically, gluten-induced autoimmunity could trigger ALS. However, the data supporting this link are weak, consisting of two association studies and a single case-report. Further studies are needed to confirm the relationship between GRDs and ALS, and the utility of the GFD in patients with both conditions. In spite of the fact that GFD is reasonably […]

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