While in the hospital experiencing my first large flare-up, I was lucky to have been sent a file of detailed questions to ask my doctor from a friend who had-- two years prior--gone through the same experience. I believe every person in that position deserves the same help. Let me be that friend. If you have MS, have symptoms of MS, or are in the hospital experiencing a flare-up; here are questions to ask your doctor to help you navigate which treatments to go on, what category of MS you fall into, and if you have MS (as there are a few other diseases that present similarly).
Questions:
What is Multiple Sclerosis?
Since I have symptoms, should I get an MRI?
What about a spinal tap?
Are you also testing me for MOGAD and NMO? MOGAD and NMO present very similarly to MS. Many neurologists don't test for them and few even know what they are. My good friend has MOGAD--aka MOG--but was initially diagnosed with MS by a very reputable hospital. He decided to get a second opinion at Columbia University Medical Center where he was diagnosed with MOG. He is now thriving on his appropriate treatment. Many speculate that others are living with an inaccurate MS diagnosis. I would push your doctor to test for these if they have not already. When I asked my neurologist if they were testing me for MOG he laughed and responded "I can count on one hand how many patients have asked me that. Yes, we are testing. Clearly, you have done your research." It is evident not many people know about the rare cousins of MS but they should certainly be tested for.
Will you be testing me for Lymes Disease? (also presents similarly)
Are you testing if I am JCV positive? This is John Cunningham Virus. 40-90% of the population is positive. You'll need to know if you're positive before picking a treatment plan.
Am I now considered immunocompromised?
What is a flare up and are they more likely to repeat in the same region as before?
What lifestyle changes should I make (ie. diet, exercise, mental health, job, travel, etc.)?
Will I need to come to the hospital every time I have a flare-up to receive steroids?
What is the difference between symptoms and a flare up and how should I differentiate between the two?
How many times a year will I need an MRI? Will I always need contrast?
Questions to ask your doctor AFTER the MRI(s), spinal tap, and blood work are done.
Which type of MS do I have?
Do you expect my symptoms to resolve and what is an expected timetable?
Can I get the NFL (neurofilament light) Test? This is a blood test that measures on a scale of 1-10 how progressed you are. This test is not to be compared to other people's as many personal demographics factor into each result.
How long are my lesions?
How many lesions do I have?
Where did you see lesions and how might these lesions affect me?
Do I have any faded or healed lesions?
Were oligoclonal bands present in my spinal tap fluid?
Am I JCV positive? If yes, should I stay away from DMTs (Disease Modifying Treatments) like Tysabri?
If I am negative for JCV now, is it possible I can become positive down the line?
What is PML and am I at risk of it?
Which DMTs are you considering for me and why? Do you think a high-efficacy, moderate-efficacy, or low-efficacy treatment would serve me best?
What are the pros and cons of each DMT? (ie. malignancy, PML, pregnancy risks, immunosuppressant, etc).
What clinical trials are being conducted? Am I eligible for any?
Which supplements can I take that won't conflict with my treatment? Should I take vitamin D (to resolve any deficiency)?
Can you send me any resources, referrals, or recommendations for physical or occupational therapy?
When can I return to work? Do you expect me to have any limitations?
Once presented with treatment options, you'll want to figure out which is best for you. This will vary greatly depending on a wide range of factors. Luckily, there are over 20+ different treatment options available and all have great benefits. The link below will help you navigate that chapter.
Link source - National MS Society
Because the information on this blog is based on my personal experience, it should not be considered professional medical advice.