Worried About An ALS Diagnosis? Stop And Read This!

Worried About an ALS Diagnosis? Stop and Read This!

On June 2, 1941, baseball legend Lou Gehrig passed away from a progressive disease that now carries his name. Each year, about 5,000 people in the United States are diagnosed with the same condition, according to the Centers for Disease Control and Prevention (CDC).

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a serious disorder that damages nerve cells in the brain and spinal cord. These nerves control voluntary muscle movement, which includes activities such as walking, talking, and swallowing. Because ALS can look similar to other conditions at first, learning to recognize the signs you have ALS is important for getting an accurate diagnosis and the right medical care.

How ALS Affects the Body

ALS damages the motor neurons that connect the brain and spinal cord to the muscles. When these nerve cells stop working, they cannot send signals that tell muscles to move. Over time, this causes muscles to weaken, shrink, and lose strength.

The disease mainly affects voluntary muscles, which are the muscles we can control. Functions like heartbeat and digestion are usually not affected. Most people do not have bladder or bowel problems early in the disease, although some may notice mild changes in later stages.

Pain is not a main symptom of ALS because the condition targets motor neurons, not pain nerves. However, some people experience muscle cramps, tightness, or stiffness as their muscles lose strength. This makes deep muscle relaxation techniques and incorporating more daily living aids to help you during ALS progression all the more important.

Early Signs You Have ALS

ALS can affect adults of any age, but it most often appears between the ages of 40 and 70. Early symptoms may seem small at first, which can delay diagnosis. If you notice several of the following signs, it is a good idea to talk with your doctor:

  • Ongoing weakness in one hand, arm, leg, or foot
  • Muscle twitches, known as fasciculations, in the arms, legs, or tongue
  • A weaker grip or a tendency to drop things
  • Muscle stiffness or cramping that continues to worsen
  • Slurred or slowed speech
  • Fatigue that does not go away with rest
  • Trouble balancing or frequent tripping
  • Difficulty chewing or swallowing

These symptoms usually start in one area of the body and gradually spread to nearby muscles. For example, weakness in the hand might later move to the arm or shoulder.

How ALS Is Diagnosed

ALS is challenging to diagnose because its symptoms can look similar to other neurological diseases. Doctors use a combination of tests to rule out other causes before confirming ALS.

Step 1: Neurological Examination

A neurologist checks for muscle weakness, changes in reflexes, twitching, and coordination problems.

Step 2: Laboratory Tests

Blood and urine tests help rule out conditions such as vitamin B12 deficiency, thyroid disease, autoimmune disorders, or infections that can mimic ALS symptoms.

Step 3: Imaging and Nerve Studies

Magnetic Resonance Imaging (MRI) scans can show whether there are spinal cord or brain issues that explain the symptoms. Nerve and muscle tests, such as electromyography (EMG) and nerve conduction studies, measure how well nerves send signals to muscles and can detect damage typical of ALS.

Step 4: Ongoing Monitoring

ALS is a progressive disease, meaning it worsens over time. If early test results are unclear, doctors may repeat them after several months to check for changes or progression. Managing your symptoms during this wait time can be challenging, so speak to your healthcare provider about ways to mitigate your muscle stiffness or spasms.

Conditions That Resemble ALS

Several medical conditions share symptoms with ALS, which is why thorough testing is important. These include:

  • Multiple Sclerosis (MS): Causes weakness and stiffness but often includes numbness and vision changes.
  • Myasthenia Gravis: Leads to muscle fatigue that improves with rest instead of getting worse.
  • Spinal Cord Disorders: Herniated discs or tumors can cause similar weakness or nerve compression.
  • Parkinson’s Disease: Involves tremors and slowed movement rather than muscle loss.

Unlike these conditions, ALS does not usually cause numbness, tingling, or cognitive problems, and it does not include periods of remission.

Myths and Misunderstandings About ALS

Myth 1: ALS is caused by infections like Lyme disease.

Although Lyme disease can cause fatigue and muscle weakness, research shows it does not cause or turn into ALS. About 90 percent of ALS cases are sporadic, meaning they occur without a clear reason. The remaining 10 percent are familial, caused by genetic mutations that can be passed down through families.

Myth 2: Only athletes develop ALS.

ALS affects people of all backgrounds. Some studies suggest higher rates among professional athletes, especially in contact sports, but other research has not confirmed this link. Scientists believe a mix of genetic and environmental factors contributes to ALS, not athletic activity alone.

Myth 3: ALS always causes severe pain.

ALS affects movement but not sensation. While people may feel muscle stiffness or cramps, the disease itself does not directly cause pain.

What to Do If You Think You Have ALS

If you are worried about symptoms that resemble ALS, try not to assume the worst. Many treatable conditions can cause similar problems. The best approach is to work with a healthcare professional to investigate the cause.

Steps to take include:

  1. See your primary care doctor. Explain all symptoms clearly and ask for a referral to a neurologist if needed.
  2. Track your symptoms. Keep notes about when symptoms start, how long they last, and if they are spreading.
  3. Request specific tests. Ask about EMG, MRI, and blood tests that help rule out other conditions.
  4. Get a second opinion. ALS is complex, and diagnosis often requires confirmation from a neurologist experienced in motor neuron diseases.

Living With ALS

While there is no cure for ALS yet, treatment can slow its progression and help people maintain independence longer. There are a few medications approved by the U.S. Food and Drug Administration (FDA) to help slow the disease in some people.

Supportive care is equally important. Physical, occupational, and speech therapy can help manage movement, daily activities, and communication. Adaptive devices such as power wheelchairs, speech-generating systems, and mobility aids improve quality of life and safety.

Emotional and social support also matter. Working with a multidisciplinary care team and connecting with organizations such as the ALS Association or Mayo Clinic Neurology Programs can help patients and families find guidance, clinical trials, and community resources.

Final Thoughts

Recognizing the signs you have ALS is the first step toward understanding your health and seeking proper medical evaluation. Although ALS remains a difficult diagnosis, advances in medicine, therapy, and assistive technology are helping people live longer, more comfortable lives.

Staying informed, getting regular medical follow-up, and reaching out for professional support can make a meaningful difference for anyone facing ALS.

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Author:

Megan Smith, PT

Megan has been a part of Rehabmart since its inception nearly 20 years ago. For the past several years she has been enjoying her role as HR Director while maintaining her Physical Therapy license. When she isn't working on her next in-service or working to find a new team member, she enjoys her five children, helping those who have PT type ailments, baking, practicing yoga, and working out.

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Tag » How I Knew I Had Als