Questions to Ask Your Neurologist After a MS Diagnosis

August 4, 2020 3 Comments

Category: Activism, MS, My Story
Tags: MS Diagnosis, Neurologist, Questions to ask neurologist, multiple sclerosis

An MS diagnosis can leave you blind-sided, confused and terrified. Not only are you likely experiencing physical ramifications of the disease but you’re also likely not thinking straight because you’re overwhelmed with emotions.

I remember this time in my life all too well and even though I went through the motions, I had no idea what I should have asked once I actually got into a neurologist’s office. (I mean, how could I? I was just diagnosed with a disease that I knew nothing about!)

So that’s where this new blog post comes in: Questions to ask your neurologist after diagnosis. I’ve broken them into sections:

• Understand
• Treat
• Manage

UNDERSTAND

• Please explain what multiple sclerosis is in simplest terms.
• Can you walk me through my MRI and help me understand where my lesions are and what they can mean for my every day life?
• Do I have any active lesions or only inactive? Please explain the difference.
• What changes in my day to day or overall physical health can I expect from my MS at this point in time?
• Do I have Relapsing or Progressive MS? Please help me understand the difference.

TREAT

• What can I immediately do to manage my active lesions? (If applicable) If you’re currently experiencing a flare or relapse with noticeable physical symptoms, I would ask about Intravenous steroids to to calm your symptoms and expedite the healing process.
• What ongoing medication would best suit my form of MS? What would be your 2nd choice?
• What’s the effectiveness of the medication? They should give you a percentage to measure efficacy level.
• What are the risks of the medication and how do I minimize them?

I would then compare the efficacy rates / risks / frequency with what makes you comfortable and what your goals are for you / your family. Things to consider: if you looking to start/expand your          family, side effects, frequency of medication, etc. 

• What else can I do from a lifestyle perspective to help my condition? Ask about diet, exercise, sleep, stress, vitamins recommendations
• Request lab testing to gauge your Vitamin D, B12 etc. so you know the appropriate vitamins to take – these goes a LONG way!⁣

MANAGE

• Where can I go for more information? What resources do you suggest? Who can I reach out to?
• In case of emergency, how do I get a hold of you? What should I do if I don’t hear back right away?
• How often do you recommend we meet to discuss my progress / state?

Other items for you to think about / do after diagnosis

• I recommend 2-3 consults with different neurologists so you can “interview” them and see who you are most comfortable this. Your neurologist is the single most important component in your success!
• I would also highly suggest that you talk with others diagnosed with MS (bonus if they are on the medication your doctor is recommending!). You want to hear from others who are thriving
• If you’re newly diagnosed, read this blog “Read this if you’re newly diagnosed with MS”. I promise it’ll help ease your mind, offer concrete next steps and give you hope!
• Bases on your doctor’s MS drug recommendation, I would call the drug manufacturer (Biogen, Genentech) and connect with their financial aid department. If you’re covered by insurance, more than likely you can join their assistance program and get your medication for FREE! Check out this blog post for more info on that.
• Track your symptoms and any new questions that arise (I do this on a notepad on my iPhone) and share at your next doctor’s appointment.

I hope this helps! Best of luck to your on this journey. You can always reach out to me with questions!