Could It Be LEMS?

Lambert-Eaton myasthenic syndrome (LEMS) can cause symptoms throughout the body

The main symptom of LEMS is muscle weakness, especially in the legs and hips. But LEMS can also weaken muscles in other areas of the body and affect a part of the nervous system that controls automatic bodily functions, such as saliva production, digestion, and arousal.

LEMS Symptom Map


  • Dizziness upon standing
  • Fatigue
  • Dry eyes, drooping eyelids, and/or blurred vision
  • Dry mouth, difficulty swallowing
  • Difficulty raising arms or lifting objects
  • Constipation
  • Erectile dysfunction
  • Upper leg weakness
  • Lower leg weakness
  • Dizziness upon standing
  • Fatigue
  • Dry eyes, drooping eyelids, and/or blurred vision
  • Dry mouth, difficulty swallowing
  • Difficulty raising arms or lifting objects
  • Constipation
  • Erectile dysfunction
  • Upper leg weakness
  • Lower leg weakness

 

Another way to recognize the signs of LEMS is to be aware of how these symptoms may be interfering with your normal activities. Review this list of everyday activities to see how your symptoms may be affecting your daily life.

Everyday activities that I’m finding harder to do

  • Walking
  • Climbing or descending stairs
  • Getting into or out of a car
  • Reading or focusing eyes
  • Getting/maintaining an erection
  • Talking
  • Chewing
  • Swallowing
  • Using the bathroom
  • Standing up without
    getting dizzy
  • Raising my arms or lifting
    objects

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LEMS is often misdiagnosed


If you’ve been researching your symptoms online, you’ve probably discovered that there are several conditions that can cause muscle weakness. And because diseases such as myasthenia gravis (MG), multiple sclerosis (MS), myopathy, fibromyalgia, amyotrophic lateral sclerosis (ALS), and depression are more common, many LEMS patients are often misdiagnosed the first time they see a doctor. As a result, it can take some patients years to correctly identify their condition.

The long journey to a diagnosis of LEMS

One study found that it took LEMS patients >4 years to receive a correct diagnosis

One study found that it took
LEMS patients
more than 4 years
to receive a correct diagnosis.

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That’s why it’s important to find the right doctor

That’s way too long—you’ve got a life to get back to and things to do!
That’s why it’s so important
to find the right doctor who knows what to look for.

Myasthenia gravis (MG) is the most common misdiagnosis of LEMS

Like LEMS, MG is a rare autoimmune disorder that:

  • Disrupts communication between nerves and muscles
  • Typically appears during middle adulthood
  • Causes severe and debilitating muscle weakness
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It’s not surprising that,
in a study of LEMS patients,
more than one-third
of all misdiagnoses were MG.

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Learn the difference!

Did you know that MG causes other symptoms that can help your doctor distinguish it from LEMS?

To see what sets these two disorders apart, download the “What’s Behind My Symptoms?” infographic.

Take the next step

If you’re experiencing symptoms of LEMS and haven’t been diagnosed—or you’ve been diagnosed with MG or another disorder but aren’t satisfied with your response to treatment—talk to a doctor. There are physicians who specialize in diagnosing and treating neuromuscular disorders. They can perform the right tests to identify what’s causing your symptoms.

Here are 3 more reasons to strongly pursue an accurate diagnosis:

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Feeling better

The sooner you know what’s causing your symptoms, the sooner they can be treated. Take your life off PAUSE! Choose to feel better, starting today.

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Maintaining strength

Studies show that following an effective treatment can help you maintain your strength and muscle function.

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Uncovering hidden disease

About 50% of LEMS cases are caused by cancer. For some patients, LEMS symptoms are an early warning sign that may help save their lives.

Get a free symptom-tracking journal

Complete the form below to download your journal and receive helpful information about living with LEMS.

MY NEXT STEP is a customizable patient journal that you or your loved one can use to navigate the path to diagnosis, treatment, and better health.

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