Tips For Talking to Your MS Neurologist About Progression

You may see your multiple sclerosis care provider only two to three times per year, and each visit may last 15 to 30 minutes. This means that out of the 8,760+ hours in a year you will only see you care provider for about one hour! So, when you have an appointment, it is important to get the most out of it. Especially when you are feeling like your multiple sclerosis is progressing or changing.  

Here are a few tips that may help… 

Prepare and Prioritize For Every Visit

With only 15-30 minutes of appointment time, it is vital to be prepared. Think about the two to three topics related to your multiple sclerosis that are most challenging. Try not to wait until the day of the appointment to gather any information or organize your thoughts. Give yourself a little time ahead of the appointment to think about your priorities, such as: 

1. Have you been feeling down, sad, or hopeless? If so, call your primary care or MS provider now and let them know. In addition, plan to discuss this at your appointment. 
2. Are you experiencing any new or worsening symptoms? Throughout the year, keep a calendar or journal to note any new or worsening symptoms, when they began and if or when they resolved. Note anything you did that helped or did not help the symptoms. Make a list of these prior to your appointment. Prioritize the symptoms to be sure the most bothersome are discussed during your appointment. 
3. Are you experiencing side effects to MS medications? As with new symptoms, keep a calendar or journal to note what you are feeling after taking your MS medication. If you are unsure if what you are experiencing is a side effect, write it down anyway and let your MS provider know about it. 
4. Are you having any challenges at work or school, such as trouble learning new information, following conversations, multitasking, or completing tasks? Issues such as these might indicate changes in your multiple sclerosis. Identifying new MS issues early could prompt further investigation and even a change in your MS medication. 
5. Are there any new non-MS diagnoses that you feel could impact your MS or the treatment for your MS? You may have no idea if there is any connection between the new diagnosis and MS or any interaction between a treatment for the new diagnosis and a treatment you’re getting for your MS, it is definitely something to discuss with your MS care provider! 
6. Are you planning to start or add to your family? Some medications that you take may not be safe during pregnancy, so discussing your plans before trying to become pregnant is crucial. 

Taking these steps to prepare for your doctor’s visit will help ensure that you are effectively communicating with your provider and keeping them informed about the evolution of your multiple sclerosis.  

This becomes extremely important as researchers learn more about the smoldering process that takes place within the brain, which includes ongoing low-level inflammation that may be the most significant driver of disease progression and accumulation of disability. This progression often does not show up on your MRI so your doctors increased awareness of how MS progression might be showing up in your daily life will result in better treatment.  

Planning For Your First Visit to a Multiple Sclerosis Care Provider

Preparing for your first visit with your multiple sclerosis provider sets a solid foundation of understanding about you and your MS with your provider. It is the baseline you will reflect on as you continue to live with your disease so you can recognize when there are significant changes that need to be addressed.  

1. Be sure to have any records from your previous providers sent to the MS care provider. Include test results, and if possible, please have your MRI scans available. Call the MS care provider office a week or two ahead of the appointment to be sure the records arrived. 
2. Organize your thoughts and write a few things down 
   • Timeline of the symptoms that led to the MS appointment 
   • Current symptoms 
   • Past medical and surgical history 
   • Family history 
   • All medications and supplements 
   • Allergies – drug allergies, food allergies and environmental allergies
3. Bring a list of your medications
   •  Perscription medications and why you take each 
   • Over the counter medicines – allergy medication, pain medication etc.
   • Vitamins and supplements, with dosage, if available
4. Bring a list of any other diagnoses that you may have, such as diabetes, high blood pressure, any type of cancer, stomach, or bowel problems, etc. 
5. Bring the following to every appointment:

• • The name, address, and phone number of your primary care provider
  • Your health insurance card
  • Your pharmacy name and phone number
  • Heath savings account payment card (if you have it)

Questions to Ask Your MS Provider

Preparing for your appointment will help ensure your priorities are discussed.  

Remember, this is YOUR appointment – ask questions to ensure you understand any treatment recommendations.  

Here is a list of questions to get you started: 

Questions About MS Disease Modifying Treatments: 

• What should I expect from the treatment? 

• Will the treatment help my MS symptoms go away? 

• What are the side effects? 

• Can I get pregnant while on the treatment or medication? 

• Are there any long-term risks? 

• Does the new treatment or medication interact with anything else I am taking? 

• Are there any tests that need to be done to know if the treatment is working, or to ensure it is safe for me? 

• Can I get a flu shot or other immunizations while on the MS treatment? 

• What do I do if my insurance does not pay for the treatment? 

Question about your MS  

• What type of MS do I have (relapsing-remitting, secondary progressive or primary progressive)? 

• Is it risky to have a baby when you have MS? 

• Can I pass MS along to my children? 

• Will I die from MS?  

• Will I need a wheelchair? 

• What other healthcare providers will be needed as a part of my care?  

• How often do I need an MRI? Other tests? What are you looking for? Will you contact me with the results? What could change based on the results (such as my MS treatment, or more tests will be needed) 

MS Symptoms You May Experience  

Sometimes, it is hard to know if what you are experiencing is related to MS or something else. So, it can be helpful to ask your MS care provider about what you are experiencing. Here are some of the more common symptoms that might occur with your MS: 

• Lack of energy making usual activities difficult or impossible (MS Fatigue) 

• Bladder urgency, going more often, getting up at night to go, loss of control 

• Constipation or loss of bowel control 

• Sexual symptoms – problems with attaining/maintaining an erection, loss of libido, vaginal dryness, diminished loss of sensation 

• Pain in the joints or muscles, or burning searing, squeezing, or shooting pain 

• Weakness or limited endurance noticed when walking or with other activities 

• Muscle stiffness, spasms, muscle cramps 

• Numbness or tingling sensations 

• Loss of balance and/or falling 

• Feeling depressed or anxious 

• Difficulties with thinking – memory, keeping up in conversations, attention, multitasking, learning new information 

Questions about symptoms 

At times, you may experience multiple symptoms. Try to prioritize discussing the most bothersome symptoms. When discussing symptoms, be prepared with the following information –  

• When did the symptom start?  

• Have you had it before?  

• What have you done about it?  

• Does anything make it better or worse? 

• Overall, is it getting worse?  

• Does it interfere with your usual activities? How? 

Appointments with your MS care provider can seem like a whirlwind as a lot gets packed into a very brief period of time. It is not a bad idea to ask a family member or friend to come along with you to write things down so you can listen to the MS care provider and ask questions. Having a scribe to take notes can be helpful!! Also, before you leave ask the provider for a recap and review of any recommendations or treatment decisions, just to be sure that you and your provider are on the same page.