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ALS (Lou Gehrig’s Disease)

A progressive disease of the nerve cells that control muscles, causing weakness that spreads over time and eventually affects speaking, swallowing and breathing. There is no cure yet, but medicines, a specialist ALS team, breathing and feeding support, and planning ahead can protect comfort, independence and time.

Call 911 for sudden trouble breathing, choking that does not clear, or a breathing machine (BiPAP or ventilator) that stops working while the person cannot breathe well without it. The NHS advises emergency help for anyone choking, gasping or unable to speak (NHS); with choking, quick action can be lifesaving (MedlinePlus).

What is ALS?

Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig’s disease, affects motor neurons — the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing (NINDS). As these cells die, they stop sending messages to the muscles, which weaken, twitch and waste away. ALS is progressive, meaning symptoms get worse over time (NINDS). There is no cure, but medicines can relieve symptoms and sometimes prolong survival (MedlinePlus), and good supportive care from a specialist team matters a great deal.

Symptoms: limb onset and bulbar onset

Early signs include muscle twitches, cramps, stiff muscles, weakness in an arm, a leg or the neck, slurred speech, and trouble chewing or swallowing (NINDS). Doctors describe where ALS starts:

Over time, weakness spreads, affecting swallowing, speech, breathing and weight, and some people have unintended crying or laughing (pseudobulbar symptoms). Most people stay able to reason and remember; some develop problems with language or decisions, or a form of dementia called FTD (NINDS).

How common is it?

ALS is uncommon. Using data from the CDC’s National ALS Registry, researchers estimated about 29,824 people were living with ALS in the United States in 2018 — about 9.1 per 100,000 people (National ALS Registry, CDC). Registry projections put the number at 32,893 in 2022, rising to 36,308 by 2030 as the population changes, with the largest rise among people 66 and older (National ALS Registry, CDC). The Registry identified 4,861 to 6,045 new cases a year in 2014–2016 (National ALS Registry, CDC, CDC). Symptoms most often begin between ages 55 and 75, and men are slightly more likely to get ALS (NINDS).

What causes it? Sporadic and familial ALS

Nearly all cases are sporadic: ALS seems to happen at random, with no family history (NINDS). Its cause probably involves a mix of genetic and environmental factors (MedlinePlus Genetics).

About 10% of cases are familial (inherited), and changes in more than a dozen genes can cause it (NINDS):

Gene changes are found in 5–10% of people with no family history, so testing need not be limited to familial cases; it can show who may benefit from a gene-specific treatment (VA ALS Veteran Handbook).

Veterans and ALS

Some studies suggest military veterans are about one and a half to two times more likely to develop ALS; the reason is unclear, though exposures such as lead and pesticides have been suggested (NINDS).

How it’s diagnosed

There is no single test for ALS. A doctor takes a full history and does a neurological examination of reflexes and strength, repeating it over time to see whether symptoms are progressing; an early diagnosis by a neurologist familiar with ALS matters, because treatments may work best soon after symptoms start (NINDS).

ALS can be hard to confirm at first (NHS). Our Guillain-Barré guide covers a different nerve condition that causes weakness but usually improves.

How ALS progresses

Most people with ALS die from respiratory failure, usually within three to five years of symptoms first appearing, but about 1 in 10 live 10 years or more (NINDS). Progression can be slow or fast, and can even plateau (VA ALS Veteran Handbook). Your care team can talk with you about life expectancy if and when you want to know more (NHS).

A wheelchair, a ventilator and communication technology may all become part of life (NHS). Separate MBHA guides on Nerve Damage and Wheelchair Users are on the way.

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) A multidisciplinary ALS clinic; riluzole, edaravone and, for SOD1-ALS, tofersen; physical, occupational and speech therapy; breathing support (NIV) and cough assistance; a feeding tube when needed; medicines for symptoms; clinical trials. Medicare Part B covers needed outpatient therapy (20% after the deductible). Medicines, NIV, feeding tubes and communication devices: cost estimate being researched. Medicare hospice: you pay nothing for covered services. No cure. Riluzole probably adds two to three months of median survival; NIV can lengthen survival and improve quality of life. Good team care aims at comfort, independence and time.
Chiropractic No role in slowing ALS. About $55–$100 per self-pay follow-up visit at typical U.S. practices. We found no trials, only case reports. Weak neck muscles are common in ALS; MBHA advises against neck manipulation. New weakness needs a neurologist, not an adjustment.
Acupuncture Fine needles, used by some people for comfort alongside medical care. About $90–$185 per private follow-up visit; community clinics about $50–$90. Research is mostly case reports and poorly designed studies. It is not shown to slow ALS. Consider it for comfort only, with your team’s agreement.
Herbal medicine No herb or supplement has been shown to slow ALS. Cost estimate being researched. Reviews found no benefit from antioxidants or creatine. Avoid unproven “ALS cures” and stem cell clinics; FDA has approved no stem cell product for ALS. Check every supplement for interactions and swallowing safety.
Massage therapy Gentle massage for comfort with cramps, stiffness and aches. One national chain’s membership runs about $70–$90 a month. May feel soothing, but evidence for ALS is limited to descriptive reports. Keep it gentle and positioned for easy breathing.
MBHA Wellness Coach Energy conservation, home adaptations, nutrition and weight, caregiver support, emotional support, planning ahead, and connection with ALS organizations and VA resources. MBHA coaching cost estimate being researched. Supports — never replaces — your ALS team. Practical planning can ease stress and help you spend energy on what matters most.

Approach 1 of 6

Conventional medicine (AMA)

There is no cure for ALS, but some treatments may slow it, improve quality of life and extend survival (NINDS). We don’t list doses here.

1. A multidisciplinary ALS clinic

Integrated teams — doctors, therapists, nutritionists, social workers, psychologists and nurses — are best prepared to give supportive care (NINDS). The NHS suggests a team review every 2 or 3 months (NHS).

The evidence: the American Academy of Neurology’s 2009 guideline says referral to a multidisciplinary clinic should be considered to improve care and prolong survival (AAN guideline, 2009). A Cochrane review found no randomized trials — only low- and very-low-quality observational studies, with conflicting results on survival — and stressed that missing trials are not proof that team care fails (Cochrane review, 2009).

2. Medicines that may slow ALS

  • Riluzole is taken by mouth and is thought to reduce damage to motor neurons by lowering glutamate; liquid and dissolving forms may suit people with swallowing problems (NINDS). A Cochrane review concluded it is reasonably safe and probably prolongs median survival by about two to three months; a rise in a liver enzyme was more common than with placebo (Cochrane review, 2012).
  • Edaravone is an antioxidant given by IV or by mouth, and has been shown to slow functional decline in some people; the oral form can also go through a feeding tube (NINDS).
  • Tofersen is for people with a confirmed SOD1 gene change and is given by spinal injection (NINDS). FDA granted it accelerated approval in 2023 based on lowering a blood marker of nerve injury (neurofilament light), with a further trial under way to confirm clinical benefit. Common side effects included pain, fatigue, joint and muscle pain, and more white cells in the spinal fluid (FDA).
  • AMX0035 (Relyvrio) is no longer available. FDA approved it in 2022 on the strength of one smaller trial, but a larger trial did not confirm the benefit and the maker removed it from the market in 2024 (NINDS).

3. Physical, occupational and speech therapy

Physical therapy helps maintain movement, lower the risk of falls and joint pain, and keep independence; low-impact exercise such as walking, swimming or a stationary bike, plus range-of-motion work, can help maintain strength (NINDS); trials are too small to say how much strengthening exercise helps (Cochrane review, 2013), so let your therapist set the pace. Occupational therapists suggest devices for eating, bathing and grooming, and speech therapists help you keep communicating (NINDS).

4. Breathing support (NIV) and cough help

Non-invasive ventilation (NIV) is breathing support through a mask over the nose, mouth or both. At first it may only be needed at night, but people may come to need it full time, and later some need a mechanical ventilator; cough-assist devices help clear the airway (NINDS). Some people choose a tracheostomy (a breathing tube in the neck) connected to a ventilator (VA ALS Veteran Handbook).

The evidence: in the one randomized trial in a Cochrane review (41 people), NIV lengthened median survival by 48 days and improved quality of life, but not in people with severe bulbar weakness (Cochrane review, 2017). The AAN guideline says NIV should be considered to lengthen survival (AAN guideline, 2009).

5. Nutrition and feeding tubes

Dietitians help plan small, nutritious meals, and when eating becomes too hard a feeding tube can reduce the risk of choking and pneumonia (NINDS). The tube (a gastrostomy, often placed as a “PEG”) is safest to place while breathing is still fairly strong — expert opinion favors lung capacity at or above 50% of predicted — so VA teams suggest deciding sooner rather than later. Having a tube doesn’t mean giving up food: many people keep eating what they enjoy and use the tube to top up nutrition and water (VA ALS Veteran Handbook).

The evidence: the AAN guideline says a PEG should be considered to stabilize weight and prolong survival (AAN guideline, 2009). A 2022 review concluded PEG is safe and probably prolongs survival in people who are not malnourished (review, PubMed); randomized trials of tube feeding versus eating by mouth are unlikely for ethical reasons (Cochrane review, 2023).

6. Medicines for symptoms

Doctors may prescribe medicines for cramps and stiffness, excess saliva and phlegm, unwanted crying or laughing, pain, depression, sleep problems and constipation (NINDS). The AAN guideline supports botulinum toxin B for stubborn drooling and dextromethorphan with quinidine for pseudobulbar crying or laughing (AAN guideline, 2009). For cramps, a Cochrane review found no treatment with proven benefit, though many studies were small (Cochrane review, 2012).

7. Clinical trials and expanded access

Current ALS trials are listed on ClinicalTrials.gov, and the CDC’s National ALS Registry notifies participants about research opportunities (NINDS). Ask your ALS clinic what is open (VA ALS Veteran Handbook).

Expanded access (“compassionate use”) is a possible way for someone with a serious disease to get an investigational product outside a trial when there is no satisfactory alternative. These products are not FDA-approved, may or may not work, and may cause unexpected serious side effects (FDA).

What it costs

  • Therapy: Medicare Part B covers medically necessary outpatient therapy with no yearly limit; you pay 20% of the approved amount after the deductible (Medicare.gov).
  • Hospice: with Medicare you pay nothing for covered hospice services, though other costs may apply (Medicare.gov).
  • Medicines, NIV, cough-assist machines, feeding tubes and communication devices: cost estimate being researched.

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

Chiropractic is a licensed health profession whose care usually involves hands-on therapy, often spinal manipulation (NCCIH). Chiropractic has no role in slowing ALS. Our PubMed search found no trials of chiropractic care for ALS, only case reports — including one single-patient report of spinal traction whose author called it a hypothesis needing investigation (case report, PubMed). One case can’t show that a treatment works.

Weak neck muscles call for caution. Neck weakness can be an early sign of ALS (NINDS). Serious problems after spinal manipulation are very rare but may be more likely in people with underlying health problems, and neck manipulation has been linked to rare tears in neck arteries that can cause a stroke (NCCIH). As an MBHA caution, we advise against neck manipulation for anyone with ALS.

New weakness, twitching or stumbling needs a neurologist first: neck problems and ALS can look alike, and a person can have both (case review, PubMed). For gentle hands-on care for aches, ask your ALS team first.

For reference, a typical self-pay follow-up chiropractic visit costs about $55–$100 (The Pricer).

Find a chiropractor in our directory

Approach 3 of 6

Acupuncture

We found little high-quality research on acupuncture for ALS. A 2022 scoping review gathered 92 studies, mostly from China; case reports were the most common design, acupuncture was often combined with herbal or Western medicine, and few studies reported side effects clearly. The authors pointed to poor study design and called for rigorous trials to test whether it works and is safe (scoping review, PubMed).

In short, acupuncture is not shown to slow ALS. VA clinicians encourage talking complementary therapies over with the ALS team first (VA ALS Veteran Handbook). If you try it, think of it as a possible comfort measure — never a replacement for your ALS care.

Safety

Cost: about $90–$185 for a private follow-up visit and about $50–$90 at community clinics (The Pricer).

Find an acupuncturist in our directory

Approach 4 of 6

Herbal medicine

No herb or supplement has been shown to slow ALS. There is currently no known treatment that stops or reverses it (NINDS).

Beware of unproven “ALS cures” and stem cell clinics. FDA warns that many products marketed as regenerative medicine are illegally sold, unproven and sometimes unsafe, and that no stem cell or exosome product is approved to treat ALS (FDA). A Cochrane review found no high-certainty evidence that cell-based therapies help ALS (Cochrane review, 2019). If you are considering such a product, FDA invites questions (800-835-4709) about whether it is approved and what to consider before joining a clinical trial (FDA).

Talk it over first

VA clinicians urge discussing special diets, supplements and other alternatives with the ALS team first (VA ALS Veteran Handbook).

We don’t list doses here. Cost estimate being researched.

Approach 5 of 6

Massage therapy

Gentle massage may bring comfort for cramps, stiffness and aches, but research in ALS is thin. A 2009 report by a massage practitioner described it as a useful add-on for stiffness and pain (descriptive report, PubMed); it was not a trial. A Cochrane review of cramp treatments in ALS found no studies of physical therapy for cramps (Cochrane review, 2012).

Keep it gentle and comfortable

  • Rare serious problems — a blood clot, nerve injury or bone fracture — have been reported, some with vigorous deep-tissue massage (NCCIH). Choose light pressure.
  • Shortness of breath when lying flat is common in ALS (VA ALS Veteran Handbook), so ask for a seated or propped-up position.
  • Massage is an add-on, not a substitute for the range-of-motion exercises your physical therapist prescribes to maintain strength and function (NINDS).

Cost: one national chain’s membership runs about $70–$90 a month for one session (The Pricer).

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

An MBHA Wellness Coach can help you and your family turn your ALS team’s advice into daily routines — always alongside medical care, never instead of it.

Energy conservation

VA occupational therapists compare energy to money: you only have so much, so plan how to spend it. Keep everyday items within reach, schedule what matters most for your best hours, spread chores across the week, sit to work, build in rest, and let others help (VA ALS Veteran Handbook).

Adapting your home

Planning for a wheelchair before you need one eases the change. Changes range from moving furniture and adding grab bars to ramps, wider doorways or a first-floor bathroom; ask your ALS team about a home evaluation (VA ALS Veteran Handbook).

Nutrition and weight

Weight loss is common, even early, and people with ALS may need up to 10% more calories a day; good nutrition helps protect against weight loss that can speed muscle wasting. Treat anything blunting appetite, focus on quality foods, and consider shakes between meals (VA ALS Veteran Handbook). A review of 17 studies linked a higher body mass index with longer survival (meta-analysis, PubMed) — an association, not proof. The dietitian and speech therapist can work together on meals that are easy and safe to swallow (VA ALS Veteran Handbook).

Communication: devices and voice banking

Speech therapists teach ways to speak louder and more clearly; computer speech devices can be run by eye tracking, and some people use voice banking to store their own voice for future use (NINDS). Options range from alphabet boards and voice amplifiers to tablets and dedicated speech-generating devices, and it helps to practice before you need them (VA ALS Veteran Handbook). Message banking records set phrases; voice banking captures enough sounds to build a personal synthetic voice that can say anything (scoping review, PubMed). MBHA suggests raising voice banking with your speech therapist early, while your voice is strongest.

Emotional support

Because people with ALS usually stay fully aware, anxiety and depression are common for them and their loved ones (NINDS). Talking therapy such as CBT can help (NHS), and VA ALS teams include psychologists and chaplains (VA ALS Veteran Handbook). See our Anxiety and Depression guides. If you have thoughts of suicide, call or text 988 (988 Lifeline); veterans can dial 988 then press 1 (Veterans Crisis Line).

Caregiver support

Caregivers need care too (NINDS). Tell your own doctor you are a caregiver, and ask about support groups and respite care (NIA). VA’s Caregiver Support Program (1-855-260-3274) offers training, counseling and respite for caregivers of veterans of all eras, and some caregivers qualify for a monthly stipend (VA ALS Veteran Handbook).

Connect with others

NINDS lists organizations including The ALS Association (800-782-4747), I AM ALS, the Les Turner ALS Foundation, Project ALS, the ALS Therapy Development Institute and the Muscular Dystrophy Association (NINDS). Veterans can start with the ALS Coordinator at their VA medical center (VA). MBHA coaching cost estimate being researched.

Another approach

Advance care planning and hospice

VA clinicians say goals-of-care talks should happen early and often; two of the biggest decisions are whether to have a feeding tube and whether you would want invasive ventilation through a tracheostomy (VA ALS Veteran Handbook).

Choosing hospice is not a one-way door: it is possible to leave hospice care for a while and return later (NIA). Your ALS team, palliative care clinicians and chaplain can help (VA ALS Veteran Handbook).

Another approach

Planning for emergencies

VA clinicians suggest telling local emergency services and your utility company about your diagnosis; keeping backup power for suction, BiPAP or a ventilator; keeping copies of your medicine list, advance directive and POLST handy; and calling your ALS team promptly if equipment breaks (VA ALS Veteran Handbook).

  • Succinylcholine warning: this muscle relaxant, sometimes used before a breathing tube is placed, can cause a dangerous rise in potassium in people with ALS. Tell every provider, home health agency and EMT about this risk (VA ALS Veteran Handbook).

Member stories

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Sources

This page is for education only and is not medical advice. Costs are typical U.S. ranges and estimates; yours will depend on your provider, location and insurance. Talk with your doctor before starting, stopping or combining any treatment. In an emergency, call 911. See our disclaimer.

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