Finding people who understand your situation can be challenging when you are diagnosed with LEMS. Many people who don’t know about the condition may say well-meaning things that make you feel bad. Consider looking into local or online structured support groups for people with LEMS. These are usually anonymous and can be a great place to talk to other people who have the same experiences you do.
Your Health Care Provider
A primary care provider or family doctor is an excellent first person to contact for support for someone with LEMS and medical advice. They are experienced in the physical and emotional aspects of health problems, including the impact of a chronic illness or disease on a person’s life. They can offer medical support and information about available resources, such as patient education materials. They can refer you to other specialists and guide you on getting the most out of your treatment. They can also refer you to a mental health professional if needed. It may be challenging to get an accurate diagnosis if you have a rare disorder, such as LEMS.
In most cases, doctors make a diagnosis by asking questions about your symptoms and conducting a physical examination. They will check the extent of your muscle weakness, the strength of your tendon reflexes, and autonomic changes. They will also run blood and electrodiagnostic tests, such as repetitive nerve stimulation (RNS) and increment testing. RNS and increment testing measure the release of acetylcholine in the neuromuscular junction, which transmits signals from nerve cells to muscles.
Your Friends and Family
If you have a friend or family member with LEMS, you must help them find support. Please encourage them to talk to a trusted adult, like a parent or teacher, or visit a counseling center, as these people can help answer their questions and provide support. You can also be a supportive friend by simply listening and being there for them. You can even go with them to get help or support if you’re able. Another way to be a positive force is to cheer on their accomplishments and victories. For example, if they can climb the stairs without assistance or walk up a steep walkway, you can tell them how proud you are of them. You may want to help with some of the day-to-day tasks they may struggle with, such as taking care of pets, cleaning the house, or shopping. Sometimes friends and family may not understand what you’re going through, or they may make thoughtless remarks. This can be hard to deal with, but it’s important to remember that they may not know what to say or how to help, and it has nothing to do with you. They love you and want to be there for you but may not know how to do it right now.
Your Community
About 60% of LEMS cases happen in people with underlying cancer. The most common is small-cell lung cancer, and the onset of symptoms in these people often happens before their cancer is diagnosed or treated. In the other 40% of cases, no underlying cancer is found, and people with this kind of LEMS tend to be older – primarily men – with a peak diagnosis at age 60. LEMS is caused by autoantibodies, antibodies that attack healthy tissue for unknown reasons. In LEMS, the autoantibodies target voltage-gated calcium channels on motor nerves at the neuromuscular junction. These channels typically conduct calcium into the nerve and release a chemical called acetylcholine, which helps communicate between nerve cells and muscles. This communication is disrupted in LEMS, resulting in the clinical triad of proximal weakness, autonomic changes, and depressed tendon reflexes. Some support groups are anonymous and allow people to talk about their experiences in ways that might feel safer than discussing them with friends or family. These groups can also be an excellent way to find resources and get advice from others who have gone through something similar.
Yourself
When you’re struggling with mental distress, it’s normal to feel like nobody can understand or care about what you’re going through. But that’s not always true. There are people in your life who do care about you, and they can be a source of support in many ways. It just takes a little extra work to find them and tell them what you need from them. Asking for help is a big step and difficult for everyone. It can be unpleasant if someone doesn’t react as you hoped they would or don’t have the time or resources to provide what you need. But that shouldn’t stop you from reaching out again. When you do talk to people, try to keep the conversation SMART (specific, meaningful, action-oriented, realistic, and time-bound). This will make it easier for them to respond positively. It also helps to be prepared if you’ve researched ahead of time. For example, you can share information about resources available in your community or online. You can also jot down notes about what specific support you need. This can help you remember what to say and reduce your stress. It might even help you avoid common missteps, such as asking for financial assistance or using a vague term like “stress” to describe your symptoms.
