Current treatment options for ALS are limited, but new treatments are on the horizon.

Amyotrophic lateral sclerosis (ALS) is a chronic, progressive disease characterized by nerve degeneration and loss of muscle function. Also known as Lou Gehrig’s disease, ALS is life changing and may leave you wondering what all the treatment options are.

ALS treatment involves working with a team of healthcare professionals who can help address all of your needs. This usually involves a neurologist and respiratory therapist at the very least.

There aren’t many treatment options available for ALS, but novel treatments are currently being explored. It’s possible that within the next decade, new and better treatments will be available for ALS. It’s hoped that these new medications will address the cause of the illness rather than the symptoms.

Treatment for ALS is largely focused on relieving your symptoms. This is because the exact cause of ALS isn’t fully understood. But there are medications that can help slow the progression of ALS.

Riluzole is a medication that’s often recommended to be started immediately. It’s the only medication shown to prolong survival time in those with ALS. It works by preventing the buildup of glutamate, a neurotransmitter thought to cause some of the main symptoms like weakness and loss of muscle function.

Several other medications may also be recommended to manage troublesome symptoms like painful muscle spasms. These may include the following:

Since breathing eventually becomes a central issue in ALS, options for respiratory support are discussed with a healthcare professional early in your treatment plan. This is because weakness of your breathing muscles can ultimately lead to respiratory failure.

There are a few different options to support breathing with ALS:

The need for assisted breathing tools depends on how much the disease has progressed. You might initially benefit from positive pressure ventilation and later require a tracheostomy. A ventilator may be required in late-stage ALS.

Difficulties with chewing and swallowing are also commonly observed in ALS and can lead to weight loss or malnourishment. Eating calorie-dense foods and nutritional beverages is recommended. Working with a dietician may be beneficial.

In some cases, a tube may be inserted into your stomach to provide direct nutritional support. This can be considered if chewing and swallowing become too challenging.

Are there any new treatments for ALS?

Edaravone is a relatively new medication that’s sometimes recommended to taken with riluzole. It’s an antioxidant that helps to protect your nerves from degeneration. It’s not been shown to improve survival time, but it may improve your function according to a 2018 review.

Relyvrio is another medication that was recently approved by the Food and Drug Administration (FDA) for ALS. It was shown to slow ALS progression in a small clinical trial performed in 2020. Research on Relyvrio is extremely limited though.

Several other potential therapies are currently being studied for their use in ALS, although none so far have shown to be beneficial. Therapies are nonetheless being aggressively pursued.

According to 2022 research, some therapies currently undergoing research include:

The diagnosis of ALS is based on the symptoms you report to a doctor or healthcare professional, a clinical history report, and the physical exam findings.

A pattern of particular symptoms that seem to be progressing indicates the overall presence of ALS. These include:

You can expect to work primarily with a neurologist who will order additional testing to confirm the diagnosis. These tests usually include nerve conduction studies, lumbar punctures, muscle biopsies, and an MRI or PET scan of your brain and spinal cord.

Life expectancy for ALS

Life expectancy varies for those with ALS depending on the rate at which it progresses. From the time of receiving the diagnosis, people living with ALS on average live for about 3 to 5 years, according to the ALS Foundation. But some people can live for 10 years or longer, as the rate of progression is variable from person to person.

Some factors associated with longer survival times at the time of receiving the diagnosis include:

  • no weight loss
  • younger age
  • higher functional abilities
  • higher respiratory function

There are some commonly used staging systems in ALS. Healthcare professionals may refer to the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale as an objective way of evaluating your functional ability. This scale also helps to predict overall survival time.

King’s staging system is referenced as one way of staging the extent of physical symptoms in ALS. It’s divided in five different stages, depending on how many regions of your body are affected by symptoms. These regions can include your upper body and lower body, for example.

  1. Stage 1: one affected body region
  2. Stage 2: two affected body regions
  3. Stage 3: three affected body regions
  4. Stage 4: respiratory or nutrition failure
  5. Stage 5: death

The true cause of ALS still remains a mystery. It’s understood that nerve cells within your spinal cord seem to break down over time, which causes the symptoms. But the reason for this decay is unclear.

Current theories about the cause of ALS include:

  • genetics
  • environment
  • age-related dysfunction

Several genetic mutations have been found to be involved in ALS but aren’t themselves the cause of the disease.

About 5% to 10% of all people with ALS inherited it from family members. The remaining 90% to 95% of people with ALS develop it with no known family history of ALS.

Risk factors for ALS

There aren’t many well-studied, definite risk factors for ALS. According to 2018 research, it’s thought that the following may increase your risk of developing ALS:

  • family history of ALS
  • male gender
  • advanced age
  • certain genetic mutations

If your loved one is living with ALS, supporting them is crucial in providing them with a better quality of life. They’ll need help with everything from decision making to daily living tasks. Some things you can do to help include:

  • understanding the basics of ALS
  • keeping them company
  • taking them to healthcare appointments
  • helping them with daily activities of living such as eating and getting outside

As their disease progresses, they’ll almost always continue to lose functional capacity. This means that you’ll be more involved in their care. It’s important that you take care of yourself as well.

ALS support groups for loved ones

Providing the care needed for someone living with ALS can be taxing. That’s why there are support groups specifically for ALS caregivers.

The ALS foundation offers a list of support groups that you can search for depending on which state you live in. Attending a support group can provide you with more knowledge about ALS care and with the opportunity to connect with other caregivers.

As you face the challenges of living with ALS, it can help to get support from medical professionals, family, and your community. The illness’s nature is progressive, resulting in extreme loss of function and the need for significant medical treatment.

Working with a team of healthcare professionals can help improve your quality of life. It’s essential to get treatment as early as possible and to stick with it. As research continues, more treatments are expected to become available.