What to Expect
Discover helpful insights for the road ahead
For many patients and their families, receiving a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS) is a great relief! After years of searching for an answer to their mysterious and debilitating symptoms, finally uncovering the cause of their muscle weakness and fatigue is a positive experience! For others, learning that they have a lifelong condition that may worsen over time causes fear and concern. If you or your loved one has just been diagnosed with LEMS, chances are, you’re feeling a little bit of both. Fortunately, knowledge is power, and diagnosis is usually a great jump start for most patients.
Now that you know it’s LEMS, you can focus on learning what to expect and what you need to do. (Hey, you’re already doing that by visiting this website!) On this page, you’ll learn how LEMS can progress over time and how treatment can help. You’ll also discover lifestyle tips that can make managing symptoms a lot easier. There’s also information about how to prepare for medical procedures and the twists and turns that we can’t always see coming.
Read on!
I FELT LIKE I WAS RUNNING THROUGH QUICKSAND!
My first impressions of LEMS
Rich, a police dispatcher and recently diagnosed LEMS patient, describes what he felt when he first noticed the symptoms of LEMS.
HOW LEMS MAY PROGRESS
Although symptoms can vary from patient to patient, the first sign of LEMS is often muscle weakness in the legs and lower body. Left untreated, LEMS symptoms may progress and affect muscles in other areas as well as the part of the nervous system that controls autonomic bodily functions, which include digestion and production of saliva and tears. Symptoms may progress more quickly in cases where cancer is involved.
LEMS symptoms may spread and worsen*
*The graphic above shows symptoms patients with LEMS may experience as the disease progresses. Not all patients will develop every symptom represented, nor will symptoms always develop in the order shown above.
Potential consequences of a delay in diagnosis or
treatment of LEMS
Spread and severity of symptoms
Loss of function and mobility
Loss of independence and quality of life
I FELT LIKE THE WORLD WAS ON MY BACK.
How Rich’s symptoms progressed
Rich describes how his LEMS symptoms grew worse in the following months and how it affected his job before he was finally diagnosed and treated.
LIFESTYLE MODIFICATIONS CAN HELP MAKE A DIFFERENCE
As with any chronic condition, there are things that you can do to help maintain your health and daily activities. The following tips may be especially helpful for patients with LEMS. Be sure to check with your doctor before starting any new exercise regimen or trying a change in diet.
Stay on schedule
Be sure to follow your doctor’s prescription as closely as possible—particularly at the start of treatment, when your doctor may make dosage adjustments to provide you with the best relief of your symptoms. Studies show that following an effective treatment can help you maintain your strength and functional mobility.
Exercise moderately
With your doctor’s approval, consider light weight training or physical therapy to help improve stamina and maintain muscle strength. Daily walking and breathing exercises may also increase your energy levels.
Stay cool
Symptoms of LEMS may get worse when you become overheated or have a fever. Be careful not to overdo exercise, and avoid taking hot showers or baths. Contact your doctor if you start noticing signs of a cold or flu.
Get enough sleep
A full night’s rest may help you manage fatigue and reduce stress. To make it easier to fall asleep, try to limit alcohol, caffeine, and screen time in the evening before going to bed.
Eat a healthy diet
Be sure to include lots of fruits and vegetables to give your body the nutrients and vitamins it needs to stay energized and minimize fatigue.
MANAGING LEMS OVER TIME
Over time, LEMS symptoms may change or worsen, although that is hard to predict. In addition, as we age, we naturally lose muscle mass and function. Taking the time now to prepare for the future can help you or your loved one stay active and maintain independence.
Managing LEMS today and tomorrow
Keep a weekly journal of how you’re feeling
Check in with yourself once a week and record how you’re responding to treatment and any symptoms you may be noticing. Also, check in with your doctor regularly to see if a simple dose adjustment may provide even more relief.
To help you get started, download a free symptom tracking journal
Dip into some exercise
Ask your doctor, physiatrist, or physical therapist about tailoring an exercise plan for you that will help keep your bones and muscles strong, flexible, and functional now and in the future.
Some patients with neuromuscular conditions have found that hydrotherapy (exercise in a pool) is a low-impact way to strengthen muscles and relieve pain, stress, and fatigue.
Fall-proof your home
The last thing a LEMS patient needs is a slip and fall. Inspect your home for tripping hazards such as slippery floors, loose rugs, or cluttered walkways. Consider adding handrails to staircases, bathrooms, and showers for added stability. Your insurance company may pay for an occupational therapist to assess your home for safety and provide suggestions for making everyday activities easier.
Protect against health emergencies
A medical ID bracelet or pendant can provide identification if you’re ever in need of assistance and unconscious or unable to speak. Consider using a personal medical alarm help-button system such as LifeAlert® for further security and peace of mind for yourself or your loved one.
Make a long-term plan
Sit down with your family or caregiver and have an honest discussion about the future. Discuss your concerns, fears, and expectations, and then listen to theirs. Come up with a plan of support that you’re both comfortable with, and be sure to consider contingencies that may arise. Life is full of demands, and change is the only constant. Planning ahead now means that no one is left behind.
CONSIDERATIONS FOR WHEN YOU’RE…
…SEEING THE DENTIST
- Saliva production is important for maintaining healthy gums and teeth. Because LEMS can cause dry mouth, ask your dentist if you should consider an over-the-counter spray that can help your mouth stay moist
…HAVING SURGERY
- For patients with LEMS, it is important to inform the healthcare team of LEMS prior to undergoing surgery
- The effects of general anesthetics, including neuromuscular blocking drugs, may last longer
- General anesthesia may slow breathing; however, complications are rare as long as your anesthesiologist is aware that you have LEMS and can take precautions
…SEEING YOUR PRIMARY CARE DOCTOR
- Make an appointment plan to ensure that you get everything you need from the visit. Write down things that you want to discuss, including what has changed since the last visit, concerns about new symptoms or side effects, and any questions you may have
- Record the appointment using your phone or another device to ensure that you don’t miss any directions or details the physician gives you. (Be sure to get the doctor’s permission before recording)
- Update your treatment plan following the appointment. The plan should contain detailed information about your disease and current medications. Be sure to write down the prescribed dose and schedule, cost, and any potential side effects to be aware of
- Keep good medical records, and keep all of the information up to date and together in one designated place so that it doesn’t get lost
…TRAVELING
- Discuss your travel plans with your doctor to make sure that the location and activities you have planned are safe or if you need to take any extra precautions
- Talk to your doctor about your medicines. Discuss your travel plans with your doctor to get guidance about how to safely carry your medications with you. For example, you may need a doctor’s authorization to carry your prescription medication through airport security. It may also make more sense to get your prescription refill at your destination
- If you have trouble walking, check in with the airport or train station if you think you may need to travel with medical equipment such as a cane, a walker, a wheelchair, or an electric scooter
- Carry important paperwork on your person, not in your checked luggage. You don’t want to lose important documents like your health insurance card, travel insurance, or your physician’s letter detailing any medical equipment or medication needed during travel
- If you feel unwell during travel, alert the flight attendant, train conductor, or other personnel immediately before the situation worsens
- Be prepared to deal with the climate and environment at your destination. Make sure to pack the right clothes to keep yourself warm or cool, and items like sunscreen and sunglasses if appropriate
- If you’re planning travel to a warmer climate, keep in mind that getting overheated can make LEMS symptoms worse. Make sure to stay hydrated, avoid prolonged periods in the sun, and take cool showers
- Know the location of local clinics for timely medical care or access to wheelchairs or motorized scooters. You may not use them at home, but travel can be taxing, and being in a different place may require that you have a little more help getting around
Stay informed
More content is on the way for LEMS Aware, including video stories with real patients who are living and thriving with LEMS. Sign up to stay informed about new additions to the website as well as other resources that become available.