March 22, 2023
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It’s scary to learn about everything that could get worse when you’re first diagnosed. But if I’d had a more complete understanding of how MS could affect me, I’d have made different decisions.
Recently, I celebrated my 23rd “MS-iverssary.” I celebrate the anniversary of my multiple sclerosis (MS) diagnosis date each year as my way of taking things back from the disease. I try to turn what would normally be a somber moment into a fun occasion.
I celebrate how I’ve managed to keep going despite MS. It’s also a time when I reflect on my years with MS. It often serves as a reminder of how much I’ve learned, and the things I wish I knew back on that day when I was diagnosed.
Unlike many people who are diagnosed with the disease, MS was no stranger to me when I was diagnosed. My grandfather had MS first. When I was very young, he moved in with my family so we could help care for him, and over the years I saw him decline.
So, when I was diagnosed, it wasn’t like I was completely uneducated on the disease. I knew a lot more than most people. That said, I’ve learned a whole lot more throughout my 23 years living with the disease.
Much of what I witnessed with my grandfather involved mobility. Early on in my own life with MS, I struggled to walk and would also routinely drop objects. In my mind, this was how MS affected people. I worked hard to have a career that I could do from my desk because I assumed that at some point, I’d need to use a wheelchair but my mind would still be fine.
I wish I had known how many more symptoms MS could really cause. It wasn’t until I’d been living with MS for 10 or 15 years that I began to experience some severe cognitive issues that would heavily impact my ability to work.
While I did have my share of mobility problems, it was really the cognitive issues that would cause me to become disabled. Other non-mobility problems, like pain and fatigue, have been among my worst symptoms, with some of the biggest impact on my day-to-day life. No one really talked with me about potential cognitive issues or pain when I was diagnosed.
Like many with MS, my initial diagnosis was with relapsing-remitting multiple sclerosis (RRMS), a type of MS that is characterized by periods of worsening symptoms (known as relapses or exacerbations). These relapses are then followed by partial or complete recovery. My own experience followed that pattern, at least at first. I’d have a relapse, then recover. I’d go back to my life, and everything would seem normal. I started to think I’d always go back to normal afterward.
I’m sure I was told about the damage done to my brain and spinal cord during these relapses. That said, I feel it was never emphasized to me enough that just because things seem normal afterward that doesn’t mean some serious damage wasn’t done.
I’d have a relapse, then recover. I’d go back to my life, and everything would seem normal. I started to think I’d always go back to normal afterward.
I am disabled today, not because of one very bad exacerbation, but because of the collective damage done over time from multiple relapses. You might have partial or complete recovery until eventually, you can’t.
This is such an important fact that I don’t think I really understood early on in my life with MS. But knowledge is power. Even though it might have been scary to think about the fact that the damage to my nervous system would accrue, it would have helped me make smarter decisions in terms about how I treated the disease.
Taking powerful steroids can be very unpleasant but it’s so important to decrease the length of relapse and thereby decrease the damage done. While I have always opted to take them — eventually — I’ve delayed taking them several times because I didn’t want to deal with the side effects. If I’d understood the potential damage I was allowing to happen, I might have made different decisions.
Keeping that cumulative damage possibility in mind is also important when it comes to taking disease-modifying treatments (DMTs). There was a period of about 1.5 to 2 years when I couldn’t take a DMT because of insurance issues. Ironically, that’s the time I felt best, so I didn’t rush to fix those insurance issues. Little did I know that the disease was still progressing, even though I felt good.
I eventually did have a relapse because I was off my treatment, and that relapse was one of the worst, damage-wise. Please, don’t let the name “relapsing-remitting MS” lead you to believe that you don’t need to take it seriously.
In my early years with MS, I thought I was doing everything right. I tried to stay fit, eat healthily, take my disease-modifying treatment, and follow all my neurologist’s instructions. It wasn’t until many years later that I learned that to really battle this disease, I needed more than those basics.
I’ve learned that it takes more than a good neurologist; it requires experts in other disciplines as well. The best thing my neurologist did for me was not to recommend a specific medication but to enlighten me about the importance of seeing other specialists when the need arises.
In particular, I have found speech, physical, and occupational therapists especially helpful. My neurologist helps me battle the disease itself, but these experts help me deal with the effects of MS, and they are invaluable.
When I was diagnosed, I had no idea that living with MS would be an absolute assault on my mental health. Depression has been a very big issue for me, particularly after I passed the 10-year mark of being diagnosed. Having to leave my career and go on disability made things even worse, to the point that I was considering options that were once unthinkable to me.
I have had moments where suicide seemed like the best option. I’m not alone in that either, as at least one study has shown that people with MS have twice the risk of suicide as the general population.
I should have been more concerned with my mental health and sought help for it sooner than I did, because experts can help people recover from depression and suicidal feelings. So, add a mental health professional to that team approach I mentioned earlier.
Remember that you’re not alone
If you or someone you know is in crisis and considering suicide or self-harm, help is available with these resources:
One thing I wish I knew at the start is that not all doctors will be helpful. Research on MS is ongoing, and new advances are made each year. That’s fantastic, but it also means that you really need a specialist who is up to speed on the disease. I definitely stayed with some doctors for too long when they weren’t helping me.
I wish I could tell the younger me that it’s OK to move on and that seeking a new doctor is important. A real MS specialist can make a huge difference; at least it did for me.
There are so many things I wish I knew back when I was diagnosed that would have positively influenced my life with MS.
Understanding how the disease works and the areas that it can potentially affect would have set some more realistic expectations and altered the way I approached treatment. I would have also engaged more than just a neurologist to join my team, and explored other disciplines to combat my symptoms, including mental health. I’d have also worked harder to find the right doctor.
While I can’t go back and change anything, I hope others can avoid my mistakes!
Medically reviewed on March 22, 2023
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