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Questions to Ask Your Neurologist About Your MS

By Gary Birnbaum
March 30, 2020

You’ve just been diagnosed with MS. You’ve heard about the disease (“OMG, I’m going to be in a wheelchair”). You’ve heard something about the medications that are now available for MS, but know little about them. You’ve seen other people with MS, but how does their course relate to yours? What can you do to prevent disability?

​These and many other questions crowd in on you, and it all seems overwhelming. You need to spend more time with your neurologist or nurse specialist, but don’t know where to start. Hopefully the following questions to ask will be a guide for you.

  1. What kind of MS do I have? I heard there are three patterns of MS, relapsing forms of multiple sclerosis, primary progressive multiple sclerosis, and secondary progressive MS. How do they differ?
  2. I understand that no one can predict the future, but there are some changes that may indicate milder or more severe disease in MS (for relapsing MS, these include the nature of the attacks, the degree of recovery from attacks, the numbers of attacks, the location and nature of the changes on MRI scans of the brain and spinal cord, changes in spinal fluid, racial background, and gender). Do I have any changes suggesting milder or more severe disease?
  3. Should I start a disease-modifying therapy for my MS, and if so, which one? I am aware that there is some controversy regarding which category of drug to start. I know that the more potent disease-modifying therapies may involve more side effects. Do I need to be on a more potent disease-modifying therapy, or can I start with a milder disease-modifying therapy that still could control my MS?
  4. How can you tell if my disease-modifying therapy is working? How often will I need to see my neurologist? How often do I need central nervous system MRIs? What changes must occur before a decision is made to change disease-modifying therapy?
  5. What should I tell my children about my MS? I don’t want to scare them but I don’t want to hide it from them either.
  6. Are there things I can do to better manage my MS symptoms?
  7. When I went online, I saw many ads for dietary supplements that claimed to benefit persons with MS. Some seemed rather weird. What’s your opinion?
  8. Since MS can be a progressive disease, what changes should I expect in terms of my ability to work and my retirement plans?
  9. What changes should I make to my home should I experience a disability?

I’m sure there are many more questions that come to mind, but these could be a good start. Having a neurologist with expert knowledge of the disease and a willingness to explain all its complexities is essential for your good management and for you and your loved ones’ peace of mind.

The National Multiple Sclerosis Society is proud to be a source of information on multiple sclerosis related topics. Unless otherwise indicated, the information provided is based on professional advice, published experience, and expert opinion. However, the information does not constitute medical or legal advice. For specific medical advice, consult a qualified physician. For specific legal advice, consult a qualified attorney.

Gary Birnbaum

Gary Birnbaum is a neurologist-immunologist. He has devoted his entire professional life to the care of persons with MS and to researching the immunological basis of this illness. Learn more about him and his work on his blog.

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