Does LEMS have other symptoms beyond muscle weakness?
People with LEMS may also experience fatigue, dry mouth, weakness of the head and neck muscles, constipation, dizziness upon standing, dry eyes, and blurred vision. Men may experience impotence erectile dysfunction.
LEMS is a rare condition. It is estimated to affect approximately 3,000 people in the US.
Who usually is affected by LEMS?
LEMS typically affects men and women between the ages of 35 and 60. Both men and women are equally at risk. LEMS is more common, however, in people with preexisting autoimmune disorders.
What type of doctor should I see about my symptoms?
If you’ve already been to your primary care physician and are still searching for answers, you should ask to be referred to a neurologist or neuromuscular specialist. These are physicians who specialize in diseases of the nerves and muscles and will know what tests to administer to identify the cause of your symptoms.
There is currently no cure for LEMS, but there are therapies available for managing symptoms, including one treatment that is FDA-approved and proven clinically effective for the treatment of LEMS in adults. Your neurologist or neuromuscular specialist will recommend the treatment that’s right for you.
How long does it take for the effects of treatment to work?
Today’s recommended oral medications usually provide relief of LEMS symptoms within hours of taking the pill. Treatment must be taken every day in order to maintain this positive response.
Is LEMS easy to diagnose?
LEMS can be difficult to diagnose for several reasons: It is a rare disorder, symptoms may come and go in some patients, and there are other neuromuscular diseases that cause similar symptoms of muscle weakness. In fact, LEMS is most often misdiagnosed as myasthenia gravis (MG), a closely related autoimmune disorder. LEMS is also frequently mistaken for multiple sclerosis, amyotrophic lateral sclerosis, myopathy, and Guillain-Barré syndrome.
The good news is that LEMS can be accurately diagnosed based on the results of a physical examination and confirmatory testing with a blood test or a painless nerve stimulation test known as electromyography.
Is LEMS caused by cancer?
LEMS is caused by an overactive immune system. However, in about 50% of cases, the overactivity is related to an underlying tumor, most often small cell lung cancer. The other 50% of cases are purely related to immune system dysfunction.
Who is most at risk for cancer-related LEMS?
Most cases of cancer-related LEMS occur in people with a history of smoking.
What will happen if I’m diagnosed with cancer-related LEMS?
Your neurologist will refer you to an oncologist for treatment of the cancer, usually chemotherapy. Treating the tumor with chemotherapy may also help improve the symptoms of LEMS.
Achieving successful remission of the underlying tumor does not guarantee relief of your LEMS symptoms. If those symptoms do persist, it’s important to speak to your neurologist about starting (or continuing) therapy that will specifically address your LEMS symptoms.