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Nurse Catherine Asks...

Have you ever had someone notice that you were experiencing symptoms before you did? Maybe they noted that you were misplacing things more often, or having trouble finding the right words. This can be very helpful. Your friend or family member has given you important information that you can bring to your healthcare provider. Have you ever had a friend or family member notice a symptom before you did?

Stewart Answers...

The role of friends and family when it comes to tracking MS symptoms

Tracking multiple sclerosis symptoms and progression can be very difficult. Sometimes a change in how you’re feeling is dramatic and impossible to miss. Unfortunately, I’ve found that many of my symptoms were much more subtle, and crept up slowly, so I wasn’t immediately aware of them. I unconsciously compensated for small changes I did not notice until things were more severe. That’s where others come in. My family and close friends all know I have MS, and my personal set of symptoms, and we occasionally talk about my condition. The subject isn’t taboo, but it doesn’t dominate the conversations either. It’s a fact of the life we live, but my life doesn’t revolve around MS.

MS One to One Ambassador, Stewart, and his friends

When I was going through the Veterans Administration disability process, I was surprised to hear just how much weight a statement from one or more family members carried. When I asked about it, one of the VA representatives pointed out that someone can fake it all day at work, but the family sees the person when their guard is down and sees the impact. That has proven true for me.

My wife is my best observer and often notices the signs that I’m beginning to overheat or overexert myself before I recognize them. She was also the first to notice when I would repeat myself or pause to search for the right word. When she sees a behavioral change, she sometimes comments on it. The cause is often something other than MS, but I know she’s watching. Several years after I first showed symptoms, but before the diagnosis of MS, the “foot drop” in my right leg seemed to be shifting to my left leg as well. She also noticed that change before I did.

Relapsing multiple sclerosis patient, Stewart, gardening

Part of my preparation for an appointment with my primary healthcare provider or the neurology team is doing a self-assessment of my physical, emotional, and intellectual condition. I consult any journal entries I may have made, and I solicit my wife’s input and observations to complete the record. I am then prepared to have a candid dialogue with the provider and can provide specific information that might have otherwise slipped my mind during the appointment.

Stewart consulting his journal entries of his MS symptomsClose friends, family members, roommates, and significant others can be a very valuable resource. They may not feel comfortable discussing their observations without being asked, but they know what your “normal” looks like and are positioned to spot changes.

See What Pam Says
Pam Answers...

The role of friends and family when it comes to tracking MS symptoms

As I was processing what was happening to me physically and emotionally after my multiple sclerosis diagnosis, I realized I had some new issues to deal with and a lot of questions I wasn’t sure how to answer. How do you talk about MS with other people? How do you keep it from stealing your identity? How do you help inform other people without looking self-centered? Can other people help you by noticing symptoms you might have overlooked?

I found myself playing a game of emotional tug-of-war over the fine line of how much to share. It wasn’t my style to bring up my MS to anyone who would listen, even if it was in an effort to help everyone understand the condition. I was afraid it would come across as if I were someone who craved attention and was taking advantage of my MS as a platform to receive it. On the other hand, by not saying anything at all, I worried I’d feel lonely. Also, by not explaining what was happening, people might just get confused. They knew something was going on, but some were unsure if they should or shouldn’t ask me about it, being respectful of my privacy or paralyzed by political correctness.

Sharing with my family, though, comes naturally for me. My in-laws are very caring. They were genuinely eager to learn about how my MS would, and still does, affect me. They lightheartedly remind me about some of the symptoms that they observe. It’s great to have another perspective to keep you from missing an important point you need to bring to your healthcare provider’s attention.

MS One to One Ambassador, Pam, and her family

For example, there was the time I lost a brand-new BULK-size pack of diapers. I knew I brought it home from the store for my daughter, only to find it months later, in the bottom of the chest freezer. Obviously, while putting groceries away, I had experienced some brain fog. I must have justified why putting diapers in the freezer made sense. (A sure way to cool off some hot buns?) My extended family lovingly remind me of this lost-and-found story, 18 years later. And we laugh.

Months after putting away groceries….mistakenly put in the freezer due to brain fog.

With people outside my immediate family, I usually wait for a relationship to develop before I disclose my MS. I figure they should first learn to trust who I am before I make them privy to my daily symptoms and struggles. I recognized when people showed a true interest in what I am going through, and with those people I talk a bit more about MS. 

RMS patient, Pam, and her friends

The way I see it, MS should never be the elephant in the room. When it comes to how MS is affecting me and how I am dealing with it, by all means, please ASK me. I want people to feel comfortable asking me anything about MS. It took me awhile to get in tune with how to have the most productive and respectful conversations, but it seems to have worked well for me.

By sharing what I was learning at the time, it seemed to engage others to learn more, too. Maybe they’d even share information with a loved one or friend who is also struggling. My friends know that I am approachable and always willing to share my story. I have been introduced to many new friends of friends, because they had someone care enough to contact me. I have been so blessed from the outcome of having the courage to share my story.

Now where did I put my keys?

(Yes, in this family, the first response is, “Have you checked the freezer?” Now you know the 18-year-old running joke. HA HA.)

See What Stewart Says

Nurse Catherine Sums It Up

Though it can occasionally be uncomfortable, when your friends and family point out a relapsing MS symptom you may not have noticed, it’s their way of showing they care. By working together to help track your symptoms and experiences, you’re able to bring an accurate picture of your condition to your healthcare provider, helping them to find the correct treatment for you.


Want some help tracking your symptoms? Download our handy Symptom Tracker to keep an accurate record of your symptoms between visits with your healthcare provider.

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