For patients with multiple sclerosis (MS), many aspects of everyday life may need to be approached from a different angle than they were before their diagnosis.
For some patients, these different approaches may include transportation, the layout of their home or exercise methods. But for all MS patients, it is important to make a new effort to get the most out of time spent with doctors, keeping their unique symptoms and needs in mind.
A Partnership of Healing
In MS, parts of the central nervous system are attacked by the body's immune system. As the spinal cord, brain and optic nerves suffer damage, a variety of symptoms can develop.
Symptoms can range greatly in intensity and the area of the body affected. More mild symptoms may include numbness in the arms or legs, while more severe symptoms can include vision loss and paralysis.
As patients cope with the disease, their relationship and time spent with doctors become very important. The National Multiple Sclerosis Society (NMSS) stresses the importance of each patient finding a “doctor-partner” with whom they feel comfortable.
Once the right doctor is found, there may be a right way to get the most out of precious one-on-one, doctor-patient time.
In an interview provided by the Multiple Sclerosis Centers of Excellence in the Department of Veterans Affairs, Carolyn M. Clancy, MD, Director of the Agency for Healthcare Research and Quality, stressed the importance of this relationship and a determination on the part of the patient.
“We know from many studies that people who play an active role in their own health care have better outcomes,” said Dr. Clancy.
There are many ways that MS patients can take an active role in working with their doctor to build a relationship and manage their health together.
In an interview with dailyRx News, Nancy D. Chiaravalloti, PhD, Director of Neuropsychology & Neuroscience Research at Kessler Foundation, said her single most important piece of advice to MS patients is to write things down.
“Many persons with MS experience memory difficulties and also commonly have processing speed difficulties,” said Dr. Chiaravalloti. “Either one of these cognitive problems could result in difficulty remembering information and calling information to mind quickly.”
Because of these difficulties, Dr. Chiaravalloti suggested patients bring a list of issues they would like to discuss or questions they have to their medical appointments.
Writing things down may not only apply to topics the patient wants to discuss, but also advice the doctor gives.
“When the physician is prescribing medication, explaining things or offering advice, the patient should not rely on his or her memory,” said Dr. Chiaravalloti.
She recommended patients take notes, or alternatively, record the conversation. Most modern cell phones allow for easy audio recording, making the process simple.
Another way to combat memory issues during a doctor’s visit is to simply listen and look at the doctor, with total and complete focus. “If you try to divide your attention, your memory will suffer,” said Dr. Chiaravalloti.
An example? Even tasks as simple as putting on a sweater when the doctor is talking will divide your attention and can lead to difficulty recalling the information later, said Dr. Chiaravalloti.
Dr. Chiaravalloti also stressed the importance of asking any questions that you may have and for clarification if something is not clear. “This is your health and it is important that you feel comfortable asking questions,” she told dailyRx News.
The NMSS echoed this sentiment. According to the organization, “Anything that’s of concern to you, including problems with your mood, sexual function, thinking and memory, and bladder and bowel function, is of interest to your healthcare team. If you’re not sure what’s related to your MS and what’s not, ask your doctor or nurse to help you sort it out.”
Dr. Chiaravalloti said patients should also not be afraid to ask their physician to repeat something if the patient can’t recall what was said.
Dr. Clancy agreed and stressed the importance of having open, two-way conversations with the doctor.
“If you're not understanding answers to questions, you need to say, ‘Can we back up?’ or ‘Can we go back to the answer you just gave me? I'm not sure I get it,’” said Dr. Clancy.
Power in Numbers
Dr. Chiaravalloti said that it can be helpful to bring a significant other or partner along to medical appointments, if this is possible and the patient is comfortable with it. Doing so can help the patient get the most out of time with their doctor on several fronts.
Having another person present can help the patient remember the details of what was discussed. The other person can also assist with note taking and covering all the topics.
“A significant other can provide an objective point of view regarding symptoms such as memory difficulties, depression, or the ability to carry out routine tasks,” said Dr. Chiaravalloti. Having this third party point of view may help the doctor get a more in-depth look at what is going on at home.
There is another potential benefit of a partner attending visits with a doctor, though it may not be as obvious.
“Sometimes an objective evaluation by a physician will help a significant other understand that symptoms a patient is experiencing, such as depression or poor memory, are the result of the MS,” explained Dr. Chiaravalloti. “This may help the significant other accept the symptoms and work with the patient to maximize his/her functioning.”
A Special Relationship
By actively working with their doctors, MS patients can play a hands-on role in their health care and approach their health in the most effective way possible.
Dr. Clancy had one last piece of advice to patients, saying, "I think it's important to remember that a good physician-patient relationship is a lot like a marriage. There will be some bumps in the road, but it requires good communication on both sides.
“In general, what I would love from patients is – if they have a problem with something I'm telling them – that they tell me, so that I know about it,” urged Dr. Clancy. “I know that some people will find that difficult to do, but if I don't know about it, I can't address their problem.”