Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Dr. Kasarskis

Q: Like many people, I’ve had a few chronic conditions develop over the years. Now, on top of all that, I’ve recently learned I have ALS. What should I know about how the ALS affects other health problems, and how other health issues affect ALS?

A: ALS doesn’t exist in a vacuum. It happens to you when you’ve been busy living your life. If you have had injuries or other medical conditions, ALS piles itself on top of whatever else you and your healthcare team have been managing. Sometimes other issues suddenly spring up while you’re dealing with ALS. All these situations are termed “co-morbidities,” which basically means that two or more conditions are occurring at the same time and may complicate your treatment and care.

Sometimes the complexity of the co-morbidities can even affect your doctor’s ability to make the diagnosis of ALS itself. For example, I recently saw a patient in our ALS clinic who had previously had a motorcycle injury to his neck and spinal cord, then had a spinal fusion, and then a nerve injury at his elbow causing hand weakness. Now he appears to have new progressive weakness on top of all this, but his co-morbidities make the diagnosis of ALS much more difficult.

Some people with ALS also have chronic obstructive pulmonary disease (COPD) from smoking or asthma, both of which can make the respiratory problems due to ALS more difficult to manage since these patients are essentially fighting two separate disorders affecting breathing.

Others with ALS also have diabetes, heart disease, or cancer and some have had years of sleep apnea. Patients may also have liver dysfunction, which could potentially affect their ability to take Rilutek® (riluzole). As you can imagine, ALS plus another major condition is sometimes much more that 1 + 1 = 2.

For these reasons, it’s critical when you have several different conditions to make sure that everyone on your healthcare team physicians, respiratory therapists, nurses, physical therapists, and others is aware of your total health status. Bring a list of all your diagnoses and all the medications you are taking with you to each healthcare appointment. It’s also critical to be sure other healthcare providers, such as dentists, are also aware of the full spectrum of diseases you’re dealing with. Sometimes it may be helpful for physicians to talk with each other by phone about your situation, especially if your condition is changing or if you are planning to have surgery or start a new treatment.

You may also experience new symptoms and wonder, “Is this due to ALS or something else?” Ask your neurologist and other members of the clinic team when you have such a question. They usually can help you sort out how your various issues and medications may be affecting you.

Be prepared for your physician and clinic visits. Bring a checklist with your questions and concerns. As I often tell people, “the best prepared patients get the best care.” This is true for anyone with multiple diagnoses and especially true when one of the diagnoses happens to be ALS.

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won't be able to address all questions and we won’t be able to respond to individuals personally.