When you learn you have ALS (amyotrophic lateral sclerosis), also called Lou Gehrig’s disease, your mind might immediately rush and think about what your diagnosis means. You and your loved ones may not know how to feel, or what to do next.
At HealthPartners and Park Nicollet, we’re here to help. Our expert team of neurologists will listen, answer all your questions and start putting together an individualized treatment plan. We focus on compassionately treating you as a whole person, so you feel supported and empowered as you understand your diagnosis and start to adapt to life with ALS.
We’ll tailor your care according to the latest medical research, closely collaborating to bring you the best treatment options. We’ll guide you through your choices. And together, we’ll help you manage your symptoms, get answers and make informed decisions.
Your central nervous system controls much of your body’s natural functions. It does this by transmitting signals from your brain, through your spinal cord and to your muscles. The nerve cells that control your muscles and tell them to move are called motor neurons.
ALS is a neurological disorder that affects your motor neurons and causes them to deteriorate. This means your brain can’t communicate as well with the muscles you use to walk, chew, speak and perform other actions. As a result, those muscles are used less and less, so they become weaker and smaller.
ALS is a progressive disease, meaning motor neuron breakdown affects more muscles over time. Treatment focuses on preventing complications and managing your symptoms to help you retain control of your muscles longer and increase your comfort as you adjust to living with ALS.
In addition to rarer varieties, we treat all common types of ALS and motor neuron diseases, including:
- Classical ALS – The most frequent type of the disease.
- Familial ALS – When multiple people in the same family experience ALS (SOD1 ALS, TDP43 ALS, C9ORF72 ALS).
- Primary lateral sclerosis (PLS) – Where only the motor neurons around your brain are affected.
- Bulbar-onset ALS – Where symptoms begin with difficulties speaking and swallowing.
- Progressive bulbar palsy (PBP) – When symptoms primarily affect speaking and swallowing.
- Progressive muscular atrophy (PMA) – Where only the motor neurons along your spinal cord are affected.
- ALS with frontotemporal dementia – Where ALS also affects non-motor neurons in the brain.
- Post-polio syndrome (PPS) – A condition that can affect polio survivors, decades after they recover.
- Kennedy’s disease (Progressive spinobulbar muscular atrophy) – A rare, inherited, progressive neuromuscular disease.
Initial ALS symptoms vary from person to person. They’ll often start in one area of your body, gradually spreading to other areas and becoming more noticeable over time. Common early symptoms include:
- Difficulty using your arms or legs
- Falling or tripping
- Muscle aches, spasms or stiffness
- Muscle cramps or twitching, usually in your arms, legs or tongue
- Problems chewing or swallowing
- Slurred or thick speech
- Trouble holding on to things
- Weakness in your limbs, hands or feet
Most people with ALS don’t experience serious pain. Issues with sensing also aren’t typical of ALS.
Some symptoms of ALS are similar to other conditions. If you’re experiencing symptoms resembling ALS that concern you, we recommend visiting one of our primary care doctors. Our primary care doctors are experts at diagnosing hundreds of conditions and can help you understand what’s causing your symptoms. If your symptoms may be due to a neurological condition like ALS, we’ll connect you with one of our board-certified neurologists.
Because symptoms of ALS can be similar to that of other conditions, there isn’t any single test or procedure to determine if you have ALS. Instead, we diagnose ALS by ruling out other conditions. This is called differential diagnosis.
As an initial step, we’ll start with a full physical exam and a detailed review of your medical history. We’ll learn more about what symptoms you’re experiencing, how long you’ve had them and how your symptoms affect your daily routines.
Based on these findings, we may then conduct a variety of tests to help us exclude other possible conditions and discover more about how your nerves and muscles are functioning. These tests may include:
- Blood tests, urine tests or spinal taps (also called lumbar punctures) – These tests help us look for any signs of infection so we can more clearly find the source of your symptoms.
- Imaging tests, like MRIs – Results from these scans can help establish if other factors, like slipped discs or spinal cysts, are causing your symptoms.
- Electromyogram (EMG) or nerve conduction study (NCS) tests – For an EMG test, we’ll use electrodes to measure internal electrical activity when your muscles are both flexed and relaxed. NCS tests are similar and use electrodes to measure how well your nerves are sending signals around your body. These tests help us determine whether your symptoms may be muscular or neurological in nature, and we can use the results of these tests to help create your treatment plan.
We consider the results of all these tests, information about your symptoms, your medical history and the findings from your physical exam to determine if you have ALS or another condition.
If you or someone you know has received an ALS diagnosis, we understand that the news can be life changing. Our neurologists will take the time to answer all your questions, review what you can expect from your diagnosis, discuss each possible treatment option and create a customized treatment plan centered on you. We’ll also connect you with support resources for people living with and affected by ALS.
Scientists are actively researching ALS to better understand how the disease works, develop new treatment options and eventually find a cure.
Today, treatment for ALS typically focuses on minimizing debilitating symptoms, building your quality of life and creating a comfortable, empowering environment.
Our expert team of neurologists, therapists, pathologists, nurses and other specialists will help you understand which treatments may be right for you. Though ALS may change the way you move and speak, our specialists will focus your care on treatments that enable you to continue healthy relationships with friends and family. Our team combines the expertise of over 50 specialties so that all the care you receive is coordinated and works together.
The FDA currently approves two medications to treat ALS directly: riluzole and edaravone. Riluzole is an oral medication that may slow disease progression in some people. Edaravone is an intravenous medication that can slow decreases in day-to-day functioning. Our doctors will work with you to determine which medications are right for you.
Additionally, we may prescribe other medications to help alleviate common symptoms associated with ALS, like cramping, stiffness, depression or trouble sleeping.
Depending on your ALS symptoms, our doctors may recommend physical, occupational or speech therapy.
Physical and occupational therapy helps ease discomfort and preserve independence, focusing on techniques and devices that sustain muscle strength, improve walking, increase flexibility, enhance coordination and assist with general mobility. Speech therapy can help if ALS makes it difficult for you to communicate. You’ll learn ways to clarify your speech, project your voice and use alternative methods or tools to communicate.
We also offer additional support services that can help make living with ALS easier. Our team of psychologists can help you and your loved ones as you face ALS. And our social workers can connect you with helpful resources for you and your family.
Canes, poles, walkers, reaching devices, wheelchairs and other equipment can help you get around easier. And if speech problems are present, devices like speech synthesizers and symbol boards can help you communicate more clearly with family and friends. We’ll review which devices will work best for you and your favorite activities, and we’ll show you how to use and make the most of each device.
We can help you and your family find ways to adapt your home or routines. This can include installing ramps, sleeping on a specialized mattress or using other techniques that support your movement and comfort. Your care team will have specific recommendations based on your particular ALS symptoms.
Palliative care is treatment that focuses on improving comfort and quality of life for people with advanced ALS. Our palliative care team works closely with our doctors to provide additional support in alleviating symptoms and maintaining physical and emotional well-being.
Palliative care can be available in your home or at one of our clinics and hospitals. Our team of specialists can help you and your family better understand your advanced treatment options, perform daily tasks, manage stress, communicate with others and find peace of mind.
Run by doctors investigating new medical possibilities, clinical trials can offer hope for people who seek additional or experimental treatment paths. Your neurologist can help you determine if clinical trials might be suitable for you.
We don’t know for sure what causes ALS. In some cases, ALS is inherited. But in most cases, the disease appears spontaneously.
Right now, a combination of genetic and environmental factors seems to be responsible for ALS, but the connections aren’t yet clear. Researchers continue to investigate how ALS develops, why some people get ALS but not others and if ALS can be prevented.
ALS can affect anyone, but it appears to be more commonly diagnosed in the following groups:
- Caucasian people
- Military veterans
- People aged 45–75
- People with a family history of ALS
Neurologists are researching why ALS seems to affect these people more than others, but they haven’t yet made any definite links.
We accept most health insurance plans, including Blue Cross and Blue Shield of Minnesota, CIGNA, HealthPartners, Medica, Medicare, PreferredOne and many others.
Not sure what your insurance covers? Call the number on the back of your card for help looking at your options.
Don’t have your card in front of you? Here are member services numbers to help you get started:
- HealthPartners: 800-883-2177
- Blue Cross and Blue Shield of Minnesota: 800-382-2000
- CIGNA: 800-244-6224 (insurance through work); 866-494-2111 (insurance directly or through the Exchange)
- Medica: 800-952-3455
- Medicare: 1-800-MEDICARE (1-800-633-4227)
- PreferredOne: 763-847-4477 (in the Twin Cities); 800-997-1750 (outside the metro area)
- United Healthcare: 877-842-3210