Amyotrophic lateral sclerosis (ALS) a rare neurodegenerative disease that leads to a loss of motor neurons, which are nerve cells that control voluntary muscle movements such as walking, eating and speaking.
When symptoms first appear, your family doctor will send you for a slew of different of tests to determine the cause of the symptoms. Based on the results, if your doctor suspects ALS then they will refer you to a neurologist or an ALS specialist.
Your first appointment will take a long time and will include a nurse assessment, a physical assessment, assessment of medical history, different tests and procedures, learning about treatment options and then devising a follow-up plan.
The first appointment can be intimidating, but there are few things you can do to prepare yourself for the appointment:
- Prepare a list of questions you want to ask. Knowledge is power, and so the more you know about a disease, the more powerful you will feel in the face of it. While online sources are good for answering basic questions, it is important to take advantage of a specialist to get a more in-depth and accurate answer.
- Prepare your medical records. Gather and prepare your medical records before you go to the appointment if your family doctor hasn’t already sent them. Get any testing done that is needed to before the appointment, such as a CT scan or MRI.
- Bring a family member or friend. This can help you feel more comfortable during the appointment. Additionally, they can ask any questions that you may have missed and can help remind you about information that you may have forgotten during the appointment.
- Make sure you understand everything. Often, doctors use scientific terminology that is hard to understand. If there is something you don’t grasp or understand, communicate that to your doctor and ask them to explain it to you in laymen’s terms. There is no embarrassment if you don’t understand what is happening. After all, doctors attend 4+ years of schooling to learn about these diseases.
- Be honest with your doctor. Answer all of your doctor’s questions truthfully regarding habits, symptoms, and everything else as it is important for the doctor to get the whole picture.
- Select a physician based on your insurance plan. Specialist appointments can be expensive. Therefore, it may be important to contact your insurance company to obtain an approved list of ALS specialists in the area or request an approval for an ALS center you have already picked.
- Don’t hesitate to change physicians. Every physician has a different style of practice, and as ALS is not a curable disease, which means you will be seeing your physician for a very long time. Therefore, it is important that you like your physician, feel comfortable divulging all your information to them, and get along well with them.
- Openly discuss your needs. It is important to be open with your doctor and tell them what you are thinking and what your needs are. Often, doctors can help you with seemingly un-related needs. For example, if you are feeling depressed, doctors can prescribe anti-depressants or refer you to a therapist.
- Communicate your fears. The doctor can help allay your fears by informing you more about the disease and treatments available.
- Ask about clinical trials. Participating in clinical trials is important to the scientific research community and can bring a renewed sense of hope in the face of this disease. Ask if there are any clinical trials in the area that you can participate in. You may also be compensated for your time.
- Be involved in the plan for your care. Be assertive and if you don’t agree with the plan that is outlined for you then speak up and communicate that to the doctor. The doctor has to respect your wishes so if you are uncomfortable with any aspect of your care then you need let them know.
- Ask for referrals to other specialists. At some point in the disease course, you will need help from other specialists such as speech pathologists, psychotherapists, nutritionist and occupational therapist. Therefore, it is good to start to gather contact information from the doctor so you can find the right specialist for you for when the time comes that you need them.
- Know that you can get a second opinion. Even if your doctor is certain that you have ALS, it can be beneficial to get a second opinion from another professional. There is no diagnostic test for ALS and the symptoms of ALS often mimic other diseases. Therefore, making a diagnosis of ALS can be difficult and even skilled doctors can make a mistake. Some neurologists estimate that up to 15% of the patients diagnosed with ALS have been incorrectly diagnosed.
- Ask about support groups. It can be hard to face a diagnosis of ALS but you don’t have to go through it alone. There are support groups in most cities for patients that have been diagnosed with devastating diseases. Talking to other people in similar situations can help suppress some fears and make you feel less alone.