Getting organized after a diagnosis of ALS can be an important step in gaining control of your situation. Below are some tips to help you get organized.
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1. Learn the Basics
Obtain facts from the doctor about your ALS diagnosis. This will help you make informed decisions. Some basic questions to ask are:
~ Are there immediate health care interventions I should be considering? Is there a time frame in which I need to make decisions about these interventions?
~ Are there drug studies or other research I might consider? How might I find out more about what is available?
~ Are there assistive devices I should be considering which will help me to function better? Who can I talk to about that?
~ What factors are important for me to consider in deciding where to get my on-going care with this illness? What should I look for to choose the most appropriate doctor, team, and institution?
~ Should I seek out or follow up with any other sub-specialties in my care, such as pulmonologist, speech pathologist, physical therapy?
2. Be Informed
Call the ALS Association Greater Philadelphia Chapter at (215) 643-5434, or toll free at (877) 434-7441, and speak to a Patient Services staff member. These professional health care providers are nurses and social workers with experience caring for people with ALS. They can help you with resources for your health care and any immediate concerns you may have, such as finding a specialty ALS Center for care, support groups, how to share the news with children, family, and loved ones, day-to-day needs such as help with activities of daily living, or financial and insurance concerns. Chapter services are usually free of charge and are available to patients, loved ones, and caregivers.
3. Consider a Second Opinion
Why is it important to get a second opinion?
Your doctor has told you that you have ALS. Getting a second opinion on the diagnosis of a serious disease like ALS can be critical. Since there is no definitive test for ALS and the symptoms can mimic many other medical conditions, making the diagnosis of ALS can be difficult. Often it is only after the symptoms have progressed and the patient shows conclusive signs and symptoms of the disease that a physician can reach a diagnosis of "definite" ALS. Some neurologists estimate that as many as 15% of the people diagnosed with ALS have been incorrectly diagnosed.
You think you may have the symptoms of ALS, but no one has given you this diagnosis. It is not uncommon to hear of people eventually diagnosed with ALS who had progressive muscle weakness, twitching or cramps for a year or more without knowing what was wrong. In some situations, patients undergo treatments including surgery and other serious and expensive medical interventions for misdiagnosed symptoms. If the symptoms of muscle weakness, twitching or cramps progress despite therapies, or your doctor can't reach a diagnosis, it may be time to get a second opinion. It's important, however, not to become unduly alarmed. ALS is an uncommon disease with only 2 cases diagnosed per 100,000 population each year. This translates into approximately 5,000 new cases of ALS in the U.S. each year.
As quoted from an article in the Los Angeles Times ("Need a Second Opinion?" by Rosie Mestel. Los Angeles Times. February 15, 1999, Home Edition: Health Section, Page S-1), " ' Whenever you have doubts about your care, you should at least think about getting a second opinion,' says Peter Lee, director of consumer protection programs at the Center for Health Care Rights, a Los Angeles-based consumer advocacy group. 'Patients aren't shackled to their doctors. They need to be assertive. They need to be in control of deciding what their care should be.' "
Click here for information about how to go about getting a second opinion
4. Obtain Copies of Your Records
Always ask for a copy of your medical records and lab results, including: CT scan, MRI, EMG, and blood test results. These results are very important when meeting with other doctors, especially when getting a second opinion. Although some institutions may require new testing, it may save time and money to have these tests readily available. You have the rights to all of your records and lab results.
5. Find Resources
Contact your local ALS Association and ask to be registered with them. Also, register with the national ALS Association at http://www.alsa.org/. Explore other organizations, such as Muscular Dystrophy Association (MDA) at http://www.mdausa.org/, which also helps patients with ALS, to register with. Registering means you will receive up-to-date news and information about clinical issues, services and financial assistance you may be eligible for, should you choose to use it.
*Special note for Veterans of the US military:* ALS has been designated a “service-connected” disease, so enrolling with the Veterans Administration may entitle you to receive significant Veteran’s benefits for you and your family. This applies to all veterans, whether serving in wartime or peacetime, domestically or overseas. The veteran must have 90 days of continuous active service. Training time, for the National Guard, for example, is not counted as active service. TIP: Philadelphia Chapter ALS Association social workers can direct you in how to apply, which may expedite the VA enrollment and benefits process.
6. Explore Research Trials
If considering participating in research or a drug trial, you can find information about current research studies worldwide at the following websites:
www.alsa.org (National ALS Association): Click on the “Our Research” link in the black bar across the top of the page and select “Clinical Trials” along the left sidebar.
http://clinicaltrials.gov (U.S. National Institutes of Health): Registry of federally and privately supported clinical trials conducted in the United States and around the world. Gives information about a trial's purpose, who may participate, locations, and phone numbers for more details. for information about ALS-specific trials.
Make note of trials you are interested in to discuss with your ALS physician.
7. Utilize an Expert ALS Health Care Team
Consider selecting an interdisciplinary health care team, working to provide coordinated, on–going care while giving you a leadership role in your health care decision-making. Comprehensive ALS centers may have the most thorough care with highly qualified doctors and specialized ALS services. ALS affects many aspects of your life and requires support from many health care disciplines including mobility, nutrition, and others, and it can be very helpful to have a well-integrated team of providers who know you and are working together. The streamlined approach allows not just for “one stop shopping”- being able to see your doctor as well as up to 10 other ALS specialists in the same visit- but an interdisciplinary team may better coordinate your care, with their ability to expedite things like physical therapy prescriptions and equipment, dietician recommendations, and health insurance issues and social services referrals and paperwork.
In the tri-state Pennsylvania area, there are two ALS Association-Certified Centers:
~ The ALS Association Center at Penn Comprehensive Neuroscience Center, Philadelphia, PA (Leo McCluskey, MD, MS, and Lauren Elman, MD). http://www.pennmedicine.org/neuro/als/ or: call (800) 789-PENN (7366) during normal business hours and ask to be connected to Mary Kelley, RN, MSN, clinic coordinator at the ALS Center.
~ The ALS Association Center at Hershey Medical Center, Hershey, PA (Zach Simmons, MD). http://www.pennstatehershey.org/web/neurology/patientcare/specialtyservices/als or to make an appointment, please call (800) 292-3332 or (717) 531-4191. All other contacts: please call (717) 652-2800 or e-mail firstname.lastname@example.org. Clinic Nurse Coordinator Susan Walsh, RN, MSN will assist you.
Affiliate Treatment Centers for ALS
The Chapter also provides support for two additional clinics in our service region. Both offer specialized ALS care for patients in northeast and northern Pennsylvania.
The ALS Clinic at Lehigh Valley Hospital(Glen Mackin, MD) Call (610) 402-CARE or http://www.lvhn.org/lvhn/Health_Care_Services/Neuroscience_Care
The ALS Clinic at Geisinger Bloomsburg Hospital, Bloomsburg, PA (Medical Director Scott M. Friedenberg, MD). http://www.geisinger.org/for-patients/services-specialties/neurology-and-neurosurgery/pages/conditions-and-treatments.html#neuromuscular-disease or call (570) 271-6472.
Other places to get information include your local ALS Association chapter or support group, The ALS Association's national toll-free information and referral service (800) 782-4747 or the many reliable medical Internet web sites.
Note: While the ALS Association strongly recommends the interdisciplinary team model for care of people with ALS, it is our mission to provide support and services to you regardless of where or with whom you choose to receive your health care.
8. Prepare for ALS Center Visits
As new symptoms or side effects occur, record them in a notebook, paying attention to patterns of symptoms, times of day you notice them, for instance, or if they are connected to certain activities. If you may be interested in participating in a research trial, research and jot down available studies to discuss with your physician (websites as noted in # 6 above). Write down all of your questions before meeting with your doctor. If possible, email, fax or mail this information to your doctor’s office ahead of time so the doctor is aware and prepared at your next appointment. Bringing along a friend who can take notes and help keep your questions organized during the doctor’s visit is worth his or her weight in gold! Some may find it helpful to bring a tape recorder into your appointments. Be sure to ask your doctor and his or her staff for permission before recording your visits.
9. One-Stop Organizing:
Consider using a 3-ring binder, divided into sections, to put information as well as listing questions for clinic visits or telephone interactions. Examples of sections might be:
Home Health Agencies
Programs, events and information from the ALS Association
Include copies of ID cards, Veterans Info, and County resources. A business card insert page may be helpful for easy future reference. Bring this binder to clinic! Having one organized reference to go to saves time, and gives you a place to note the date and time of phone calls to various agencies and contacts, for easier follow up.
Please discuss this with your ALS Social Worker if you have more questions.
10. Consider All Options
Discuss your treatment options with your neurologist. Be sure to ask your physician about availability of clinical trials. Your options may include medications, physical therapy regimens, and/or assistive equipment. Although it can be challenging to learn about supportive equipment or interventions ahead of time, staying “ahead of the curve” gives you and your family time to thoroughly consider and ask questions about different options. It also allows time to apply for certain equipment and insurance benefits which often require several months’ lead time to process paperwork and/or coordinate equipment made specifically for you and your needs. Our goal is that you have it when you need it, not 3 months later.
11. Keep Doctors Informed
Proper diet and vitamins may be important to your care and well-being. Always consult with your doctor and a dietitian before taking vitamins or dietary supplements to avoid negative drug interactions. When considering alternative treatments, work with your healthcare team to investigate the scientific validity and safety of these treatments.
12. Stay Aware
Schedule regular follow-up visits with your neurologist. Most ALS clinics suggest about 4 visits a year (every 3 months), but the timing can be adjusted as needed. In collaboration with your ALS team, you may schedule appointments more or less often, depending on your situation.
13. Appeal When Rejected
If an insurance claim is rejected, discuss this with your ALS Social Worker. You may be able to appeal it by re-submitting the claim. Every insurance company has an appeals process. Throughout that process, make a copy of all paperwork that is submitted. Receiving the most state-of-the-art care may be a vital step toward your best quality of life. If your claim continues to be rejected after multiple reviewers have evaluated it, contact the state insurance commission.
14. Become Active
The best way to stay informed and learn more about ways to get involved is to join both your local and national ALS Associations’ mailing lists to receive newsletters, research updates, political action alerts, and information about patient- and family-oriented activities and events happening in your area. This is a great way to get information and meet other patients and families living with ALS. Let your local ALS Chapter know you would like the Newsletter and if you would like to receive information by email.
15. Consider enrolling in the National ALS Registry
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases throughout the United States. Most important, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease and how it can be treated. Please help us by enrolling today.
The information and services provided by the ALS Association Greater Philadelphia Chapter are for informational purposes only. The information and services are not intended to be substitutes for professional medical advice, diagnosis or treatment. If you are ill, or suspect that you are ill, see a doctor immediately! The ALS Association does not recommend nor endorse any specific physicians, products or treatments even though they may be mentioned on this site.