What Would I Tell My Newly Diagnosed With MS Self After 15 Years?

Fifteen years doesn’t sound like a long time. Twenty years, now that sounds impressive — two decades. That’s how long I’ve lived with multiple sclerosis.

My first MS attack on record

Although I wasn’t officially diagnosed with MS until 2005, I believe that the blinding case of optic neuritis I had in 2000 was my first MS attack on record. Before that, we could speculate that the depression and anxiety I developed while working on my doctoral degree in music could have been early symptoms of MS.

Sometimes hindsight is as clear as muddy waters. But time and experience do afford one the ability to see things more clearly.

Things I wish I knew when newly diagnosed with MS

Who I am now is very different than who I was in 2005. I remember that scared woman who was in a new relationship — I literally met my husband the same month I reported unusual symptoms to my primary care doctor that eventually led to my diagnosis.

I’ve learned a lot and I’ve experienced a lot. Here are a few things I would want my scared, newly diagnosed self to know.

MS is different for everyone

MS is different for everyone and statistics don’t tell the whole story. For example, when I was first diagnosed, the information available at the time referenced the high percentage of people diagnosed with relapsing-remitting MS who would transition to secondary progressive MS (SPMS) within 15-20 years. That created a lot of fear of what was to come. But here I am with stable disease, cycling regularly, and actually doing quite well.

Taking care of yourself

A combination of medication, supplements, physical activity, mental gymnastics, smart dietary choices, and drinking lots of water go a long way to helping you fight the effects of this disease.

Be patient with yourself

Don’t feel like what you CAN do any given day isn’t enough. Everything you do is ALWAYS enough! Just be kind and patient with yourself.

Friends and family may not truly understand your MS

Friends and family will likely never understand what you go through on a daily basis. Even if they read about MS, ask you questions about MS, or happen to know another friend or family member who lives with MS, they will not know what YOUR MS is like.

MS CAN impact your mental health

MS can affect mental health in a variety of ways. Do not hesitate to seek treatment and therapy if depression or anxiety become intrusive. A therapist or counselor can be very effective in helping you to learn coping skills to face many types of challenges in life related to MS or otherwise.

Look at your healthcare providers as a TEAM

Your neurologist should work with your primary care physician at the center of your healthcare team. Notes should be shared between healthcare providers following visits to keep everybody in the loop so that you ultimately receive the best care. The big picture and small details are important to keep in mind.

Keep your own records

Keep a copy of every report and test result — MRI, laboratory work, other testing. Many imaging centers will give you all the x-rays, MRIs, CT scans, and mammogram images on a CD. Keep these discs and reports for future reference.

Report changes to your neurologist

There is no such thing as living with “all the symptoms of MS.” The symptoms of MS can’t be defined by a top 10 list. All the possible symptoms can’t even be properly included in a top 50 list. But if you experience something that may or may not be related to MS, please do mention it to your neurologist.

Adaptation

Your life may never be quite the same, but it can be wonderful. Stay open to new opportunities. Be creative and flexible in your thinking and actions. Adaptation is key to most challenges in life.

Be well, my friends,
Lisa

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