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Nurse Kimberly Asks...

From the severity of symptoms, to exactly what those symptoms are, every person’s relapsing multiple sclerosis experience is different. Even diagnosis stories vary. And though people living with MS come from all walks of life, the emotional impact and challenges they face are universal. So tell me, despite your differences, why is it important to meet and learn from others with MS?

Pam Answers...

Everyone's MS is different, but we face the same challenges

As I’ve mentioned previously, my sister was diagnosed with relapsing MS a few years after I was. There were many differences between our MS journeys. For example, in the process of getting her diagnosis, she got answers much more quickly than I did. I am so grateful that she was spared from the “struggle of the unknown.” Her MRI showed more brain lesions than mine did, yet she displayed fewer symptoms than I did. I was routinely having one to two flares per year and, thankfully, she had far fewer. Because she had fewer relapses and her symptoms weren’t as severe as mine, I think it gave her a false sense that she really didn’t have it.

Even though we have similar struggles, everyone’s MS is unique to them.

We shared some of our symptoms, like a numb toe. Go figure?

I remember laughing when she told me about a time, after a medical treatment, she really craved something salty. She was driving home from the grocery store and she felt she needed to pull over so she could get the pickles out of her grocery bag in the trunk. I imagined her sitting on the side of the road, drinking her pickle juice!! Sadly, I can understand!

Through all this “mess,” she makes me laugh. We laugh about each other’s experiences often.

From all the people I have known with MS, some of the common symptoms I can relate to are numbness, painful pins and needles, balance issues, spasticity, as well as eye issues.

The number one struggle that I have is fatigue. Some days it can feel, what I can only describe as, as if I were walking through wet concrete. EVERYTHING takes a lot of effort and energy.

By paying attention to how your body responds to any given situation, you learn to recognize the signals it sends out. Learning what those signals are has helped me make decisions in how to manage those obstacles.

MS Ambassador, Pam, with her sister who was also diagnosed with multiple sclerosis

I am so thankful that I was able to be a support for my sister. I recognized that from my sister’s experience, I had the opportunity to comfort and encourage her while she found her new normal. She was the very first person who made me realize that maybe I could try to make a difference for people who are walking this path with us.

How do you deal with your struggles?

I found by turning my struggles into a positive, by using them to encourage others, it gave me a purpose for going through it myself. Our mom used to say that one day we would grow up to be best friends (especially after arguing over clothes or over our messy room). We thought she was crazy! But once again…our mom was right. We became best friends, even before MS stepped into our lives. In fact, my MS has created a stronger bond between us because the struggle is a shared one.

Relapsing MS patients, Pam, and her sister, posing with a cartoon character

See What Connie Says
Connie Answers...

Everyone's MS is different, but we face the same challenges

Multiple sclerosis is sometimes referred to as the “snowflake disease” and people living with MS as “snowflakes” because no two cases are alike. Don’t be offended by this reference. Although sometimes (especially this winter in New York) we don’t like the “white stuff that comes from the sky” or the reference meaning someone is fragile, if you take the time to really look at a single snowflake you will see absolute beauty. They do share some similarities with each other (cold, white, fall from the sky, 6 points) but they also have their own unique shape, design, and intricacy, which is influenced by many factors like wind, temperature, and the path that they take on their journey to the ground.

So, in that way, people with MS are like snowflakes in that we have some similarities, such as our diagnosis of multiple sclerosis, having an autoimmune disorder, and having our central nervous system affected. However, there are many more differences. The path that each person’s MS takes depends on many variables such as age, gender, severity of symptoms, triggers (such as temperature, stress, and infections), and treatments.

Personally, some of the more common struggles that I have faced in my 22 years with MS are fatigue, weakness, vision problems, urinary issues, and cognitive issues. Even though these are issues that many people living with MS face, my experiences with these will differ from those of another person with MS facing the same symptoms. This is due to the many reasons I have already listed, many of which we do not have control over. But there are many things that we do have control over that can help us navigate this sometimes bumpy road.

Knowing your body and recognizing early when you are headed for trouble, being active in your treatment, having open communication with your healthcare providers, having and using your support system when needed, and, most of all, having a positive attitude are all areas that we can exercise some control over our MS. It is important to educate yourself on MS, including: what the diagnosis is, what symptoms you may encounter, what to do if you are experiencing symptoms, and learning about all your treatment options. As we all know, knowledge is power. You are your own best advocate! So keep learning all you can.

See What Pam Says

Nurse Kimberly Sums It Up

Living with MS can be tough, but both Pam and Connie have chosen to see their challenges as learning experiences and pass on the knowledge. Spending time helping her sister even inspired Pam to help others who have been diagnosed with MS. Though no two cases of MS are exactly alike, knowing your body and talking to other people who understand what you’re going through can be invaluable. Learn about your symptoms, reach out for support when you need it, and help others using the knowledge you’ve acquired.

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