By Laura Heuer
Expert Health Organizer/Consultant
Answers By Megan Gardner, MS
Executive Director
The ALS Association
Jim “Catfish” Hunter Chapter
Q-First can you tell me how long it usually takes to get an actual ALS/Lou Gerhigs diagnosis?
A-ALS is a very difficult disease to diagnose. To date, there is no one test or procedure to ultimately establish the diagnosis of ALS although the ALS Association is currently funding research that will hopefully make diagnosing ALS as simple as having a blood test or a spinal tap. Currently however, it is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:
- Electro diagnostic tests, including electomyography (EMG) and nerve conduction velocity (NCV)
- blood and urine studies, including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine collection for heavy metals
- x-rays, including magnetic resonance imaging (MRI)
- myelogram of cervical spine
- muscle and/or nerve biopsy
- thorough neurological examination
These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination.
Q-Are there any tell tale signs of ALS?
A-At the onset of ALS, the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
- Muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
- Twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
- Impairment of the use of the arms and legs
- “Thick speech” and difficulty in projecting the voice
- In more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person’s early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles that affect speech and swallowing as well as in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.
Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60 percent of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.
The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.
As the weakening and paralysis continue to spread to the muscles of the trunk and of the body, the disease eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.
Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.
For the vast majority of people, their mind and thoughts are not impaired and remain sharp despite the progressive degenerating condition of the body.
Q- What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?
A-There are several diseases that have some of the same symptoms as ALS and most of these conditions are treatable. It is for this reason that The ALS Association recommends that a person diagnosed with ALS seek a second opinion from an ALS “expert” – someone who diagnoses and treats many ALS patients and has training in this medical specialty. The ALS Association maintains a list of recognized experts in the field of ALS. Contact the Jim “Catfish” Hunter Chapter for a list of local physicians and/or clinics.
Q-What are some of the best tips you feel will help a patient once they have been diagnosed?
- A-If you suspect you have ALS but are not diagnosed yet, look into the possibility of getting additional term life insurance and/or long term disability insurance.
- ALS is difficult to diagnose. If you were not diagnosed by a neurologist who specializes in neuromuscular diseases, request a referral to one for a confirmation of the diagnosis.
- Recognize that ALS is bigger than any one person or family. You will need help. There are agencies and organizations out there whose specific purpose is to help. Find them and take advantage of what they can offer.
- Register with your local ALSA Chapter. Request information about services and publications available.
- Register with the National ALS Association (800-782-4747). Request an ALS Patient and Caregiver Resource Manual and information about available services and publications.
- Register with your local ALSA Certified Center or ALS Clinic. Request information about services and publications available and sign up to receive the monthly ALS Support newsletter.
- Contact your medical insurance provider and request that you be assigned a case manager to be your primary point of contact.
- Contact an attorney who specializes in elder care law and make an appointment to discuss legal and financial planning recommendations.
- If you served in the military, contact the Department of Veteran Affairs(800-827-1000) about eligibility for health, vocational rehabilitation and disability programs and services.
- If you are employed, contact your state Vocational Rehabilitation Division and request information about available services.
- If you don’t have a computer and internet access, consider getting one. There is a wealth of information and support available on the internet.
- If you can, participate. Research ALS on the internet, attend an ALS support group meeting, join The ALS Association, go to advocacy day, write your congressional delegates… Be active. Do what you can. Do not expect others to do it for you. Being active, involved and participating is the best medicine you have.
- When the time comes, use the cane, walker, and wheelchair to conserve energy and protect your body. The last thing you need is a broken leg, arm or head.
And finally, be careful with alternative treatments that claim to slow down, stop or cure ALS. If the claims were true, they would be front-page news. Unfortunately, there are many individuals offering treatments designed to take your money rather than to cure ALS.
Q-How do you feel is the best way to get your family and friends to understand your diagnosis?
A-Talking openly about what is happening is a wonderful way for family and friends to begin to understand ALS and the impact that is has on you and your family. You can also send them to various internet websites to read more about the disease as well as the various ways they can support you.
You can also encourage your family and friends to attend ALS support groups. Support groups exist entirely for you, the person with ALS, and your family or loved ones. Here is a list of some things ALS support groups provide:
- A forum to share information and practical experience, whether it’s learning how to improve physical function, discussing new drug trials, or experiencing the latest augmentative technologies all geared to helping you live more fully with the disease.
- A safe place to allow your emotions to speak for you. The group offers anunparalleled opportunity to learn how other people cope with various problems similar to yours, to see that patients and family members are not completely unique, and that others experience the same type of feelings and emotions about the disease as you do.
- An educational gathering spot where speakers and caregivers address subjects of major interest and exchange; how to incorporate physical and occupational therapy into your life; how to counteract problems in swallowing and chewing; safeguards that can help you avoid pulmonary complications; and ways of coping with depression and caregiver “burnout”, among many other topics.
- A place to witness firsthand the constant miracle of people continuing to live productive, fulfilling lives in spite of having ALS.
For more information on lou gehrigs, ALS or Amyotrophic Lateral Sclerosis disease or diagnosis, go to www.CatfishChapter.org
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