Getting a Second Opinion
Somewhere in a folder, there is a small, crinkled up piece of paper with the words "primary progressive multiple sclerosis" (PPMS) written on it. My first neurologist handed it to me when I received my MS diagnosis in 2015. Six months later, during the first meeting with my second neuro, the diagnosis was corrected to relapsing-remitting multiple sclerosis, or RRMS. Already suspecting something was off about the PPMS diagnosis, I was relieved; it was as if I had been given an extension to my life. But I learned some valuable lessons along the way, and I would like to share them with you.
MS is difficult to diagnose
It's taken me some time to get a grasp of why my first neurologist so quickly gave me such a dire disease prognosis with few hard facts to go on. I spent a long time being angry with him for taking me on such an emotional roller coaster, but I have come to realize just how difficult MS is to contain and predict. Was he a problematic doctor? Yes. Setting the diagnosis aside, he did not handle a then 22-year-old me with care. But the pathology was confusing: although I had recently experienced an exacerbation, my spinal fluid didn't have markedly higher inflammation levels. I had not experienced a noticeable remission from my first exacerbation, and my plaques looked old on my MRI. Combining all of these factors, PPMS appeared the most logical. Thankfully, it was the wrong logic.
So, what changed my diagnosis?
What ultimately persuaded my second (and current) neurologist to leave my PPMS diagnosis behind was the fact that I showed improvements since starting on Tysabri. Because my first neurologist had the good sense to put me on it, there wasn't much of a difference in my treatment plan moving forward from the second opinion. The three times a day of Baclofen for leg spasticity got phased out, and my MRI scans became less extensive as the formation of new plaques was less of a concern.
My new diagnosis gave me space to breathe
For my mental wellbeing, the correction of my MS diagnosis left me with more space to breathe. It granted me some relief from the feeling of urgency to "do everything before it was too late." I still had MS, but it also gave me the tenacity to believe I had more time to fight this orange-ribboned monster of mine. I can only hypothesize what the past and present would have looked like had I not been given the second opinion. But I have learned that there is no use in that.
Discretion is advised when seeking a second opinion
Now, I want to be clear: I didn't seek out a second opinion. It happened because I switched hospitals. I wish I could tell you that I would have sought out a second opinion either way, but that would be a lie. I also wish I could tell you that my first neurologist was incompetent, but that would also be a lie. Had he been around to see the positive effects Tysabri had on me, he probably would have deemed my PPMS diagnosis faulty and corrected it. But all of these hypotheticals are dangerous to hold on to. I'm grateful I stumbled upon a second opinion before the "what ifs" took over. With all of that said, I think it's necessary to approach a second opinion with caution.
Keep these points in mind
If you're considering to seek out a second opinion, I'd say: do it. But keep these points in mind:
- The second opinion might not be better, more informative, or correct.
- Be clear on why you're seeking it. Are there expectations you need to address first?
- Write down the specific reasons why you're considering a second opinion, and bring them to your current neurologist first. If they can't address them in a way that satisfies you, a second evaluation could be beneficial for you.
- Involve a close friend or family member in the process. Talk about the reasons why you have doubts about your current neurologist and their opinions.
Taking charge of your health care
Even though I didn't seek out my second opinion, it felt good to take some control over my health care journey. Being in and out of hospitals, appointments, scans, treatments - it quickly gets overwhelming. I know not everybody has the option to ask for a second opinion, which is an issue far greater than what I can fit into this post. But I think it's necessary to take charge of our health and the care we receive. MS does what it wants when it wants, and the least we should be able to ask for is confidence in the person who told us that we have MS.
Would it have been helpful to hear from others and their experiences when you were beginning your MS journey?
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