Planning for the Future After a LEMS Diagnosis
Receiving a diagnosis of a rare disease such as Lambert-Eaton myasthenic syndrome (LEMS) can be frightening. Here is some information that may help — about how this disease can impact your life and tips for planning for the future.
How will LEMS affect lifespan?
There isn’t a straightforward answer to how the disease can affect your lifespan as this is dependent on several factors. Life expectancy depends on genetic predisposition to diseases such as heart disease, and on lifestyle factors such diet, exercise, and sleep. Since LEMS is a rare disease and patient numbers are small, accurate estimates on life expectancy are difficult to determine.
The most important factor that affects life expectancy in LEMS is whether or not you also have cancer. Up to 70% of LEMS patients may have some form of cancer. Patients without cancer have a normal life expectancy.
How does cancer affect LEMS?
As much as 60% of LEMS cases are associated with small cell lung cancer (SCLC). Roughly 10% of patients with LEMS have some other form of malignant tumors such as adenocarcinoma of the lungs and prostate, and acute T-cell lymphocytic leukemia. Because of the high risk of cancer, you should undergo cancer screening if you’ve been diagnosed with LEMS.
SCLC is an aggressive form of cancer. Long-term survival is 17–24 months after diagnosis. Despite this, patients with LEMS have a higher survival rate than other SCLC patients without LEMS. Those with the cancer have a 20% remission rate compared to less than 2% for patients without LEMS. The exact cause of this is unclear.
What happens after I’m diagnosed with LEMS?
You can expect many changes to your life after you receive a diagnosis with a chronic progressive disorder like LEMS.
How will symptoms affect my daily life?
LEMS can lead to a host of different symptoms that can affect your daily life. As the disease progresses, patients tend to lose strength in their muscles, making it difficult to perform tasks such as walking and eating. Several options are available for aids and assistive devices. The loss of nerve signals to the muscles can also lead to fatigue and pain, which will impact what activities you are able to do in a day.
LEMS can also affect the autonomic nervous system, the part of the nervous system that controls unconscious activities. The decrease in signals from the autonomic nervous system can lead to problems with breathing, swallowing, and bowel movements. It can also cause problems with the eyes and affect vision. All these symptoms may increase your dependence on other people as your disease progresses.
How will my diagnosis affect my mental health?
Patients diagnosed with LEMS often experience anxiety and depression due to symptoms and feelings of isolation. If you feel anxious or depressed, talk to your doctor, who might be able to recommend some psychotherapy and/or medications that can help. Support networks can also help connect you with other patients experiencing similar problems and offer information about how to deal with the disease.
How can LEMS affect sexual function and reproduction?
Since LEMS is a progressive disease that affects the nerve cells that control muscles in the body, it can lead to sexual dysfunction, such as erectile dysfunction in men and a reduction or loss of sex drive in women. These changes may put stress on your relationship with your partner, but recognize that the symptoms are connected to LEMS and not to a loss of attraction or feelings for your partner.
Despite no evidence suggesting that LEMS affects a woman’s ability to become pregnant, only a few cases have been reported of patients becoming pregnant. This is most likely due to the fact that LEMS symptoms don’t appear until around 40 when most women are past their prime child-bearing age. Two case studies in women who were diagnosed with LEMS prior to pregnancy and during pregnancy showed that their babies were born healthy and without complications.
You might also be worried about passing the disease on to your children. LEMS is not a hereditary disease, but certain genes can increase the risk of developing LEMS or other autoimmune disorders. You may want to speak with a genetic counselor about your specific case of LEMS and how this may affect your children.
What treatments are available for LEMS?
Remember that certain medications can cause side effects in patients with LEMS, so you should avoid them. Beta-blocker medications commonly used to treat heart conditions and high blood pressure can interfere with signals between the nerve and muscle cells, and worsen symptoms. Medications used for neuropsychiatric disorders can also affect the nerve signaling and make symptoms worse. Some strong antibiotics have been associated with deaths in LEMS patients.
How will LEMS affect my financial situation?
Diagnosis with any disease can lead to an increased financial burden. As a LEMS patient, you will require therapy and medications as the disease progresses, especially if you also have cancer. Progressive loss of function may also result in disability, affecting your ability to work and earn money, and increase your need for assistive devices or caregivers. All of these factors can lead to increased expenses and create financial burdens for patients.
How can I plan for the future?
A LEMS diagnosis is often related to aggressive cancers, which can affect your potential lifespan. Some of the weakness and disabilities associated with LEMS could also make you more prone to accidents, affecting your lifespan or quality of life. Therefore, you may want to make some decisions about your end-of-life plans.
Legal and financial decisions
A lawyer and financial planner can help you decide and establish in writing — through a will and/or trust — the best options for leaving an inheritance to any family members. This legal document can help avoid potential problems and disputes between family members.
You may want to set up a healthcare proxy who knows your wishes and can make medical decisions in the event that you are unable to. You can also establish an advance directive that will state in writing your wishes about breathing machines, tube feeding, and organ donation. You may want to speak with your doctor about options for hospice or palliative care, and your wishes should be communicated to your healthcare proxy.
Last updated: Sept. 21, 2020
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