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Kim

Nurse Kim Asks...

It can be hard to be honest about your symptoms when you’re worried about what they might mean. Unfortunately, ignoring symptoms doesn’t make them go away. In order to get the best care and find the right treatment for you, your healthcare provider needs to know how you’re feeling. What was the turning point when you realized how important it is to be honest about your symptoms with yourself and your healthcare provider?

Stewart Answers...

The importance of being honest when it comes to tracking your MS symptoms

I first experienced multiple sclerosis symptoms in 2003. A year later, MRI imagery revealed lesions in my brain. I didn’t quite meet the criteria for a clinical diagnosis at the time, and I was diagnosed with a different neurological condition. I happily went about my duties in the Army (and in denial) for ten years. I think I was aware of some degradation of my abilities, but I didn’t speak up, I remained silent. I didn’t want to accept that something was happening to me.

MS One to One Ambassador, Stewart, and his dog

When the formal diagnosis came in 2013, I read more about MS and all the ways it can affect the body. Wow! I think people like to have an explanation for things that happen—I was no different. I tried to attribute every wobble, moment of clumsiness, distraction, etc, to MS. My vision was going, and I needed reading glasses. “I’m going to lose my sight,” I thought. The neurologist responded, “No, you’re aging—it’s normal.” Alternatively, I started seeing symptoms that had been limited to my right leg begin to migrate to my left. Yep, that one was MS.

I had to learn to pay attention to my own body, and to the observations of others. I had to learn to pass along my experiences to my healthcare providers with as much specificity as I could. They went to medical school—I did not, so withholding information from the experts only hindered their ability to help me. I think the clearest example came from Nancy, an occupational therapist to whom I had been referred to address issues with fine motor skills. Nancy observed my gait and asked if I had ever seen a physical therapist. After I replied that I had, she wrote a recommendation that my primary physician refer me to physical therapy for a reassessment. I went to see the doctor for the PT referral and didn’t go home for several days. I was admitted for an acute MS flare. I knew that I was having mobility challenges, but wasn’t paying attention to what it really meant.

Stewart thought he was having MS-related vision issues, but found that he had put his contacts in the wrong eyes

The same concept applies to side effects of medications. Some of the side effects can be more serious than others. Your healthcare provider needs to be aware of what you are experiencing. The side effects might warrant a medication change, or your healthcare provider may have a way to mitigate the problems you are having.

More recently, I had another vision-related panic. I put my contact lenses in, and my vision actually got worse! Again, that irrational little pang crept in. What was happening? After a few minutes, I was relieved to find that I had placed my contacts in the wrong eyes! Sometimes things happen that are related to MS, sometimes the answer is mundane (and embarrassing).

Relapsing multiple sclerosis patient, Stewart

I’ve learned that I’m not alone in this fight. I’m fortunate to have an awesome team working with me that includes general practitioners, neurologists, pharmacists, and others. However, my teammates are no good if I’m not honest with them and with myself.

See What Connie Says
Connie Answers...

The importance of being honest when it comes to tracking your MS symptoms

Multiple sclerosis is an unpredictable disease with so many different symptoms. Everyone is affected by MS in a different way, and many of the symptoms that someone may experience can also be a symptom of something else. It is important that you track symptoms to help to keep it all straight. If you note that the symptom is new or has reappeared, it makes you more aware of what is going on within your body. You can see if it was something that comes and goes when you change another variable such as resting, getting cooler, etc, or if it’s a new or worsening symptom that has remained for 24 hours or more. This could indicate that you may be having a relapse and you should contact your healthcare provider.

Sometimes some symptoms that you experience, like forgetfulness, can just be part of the normal aging/busy life process. Sometimes I have thought that my MS has progressed only to find out that my friends who do not have MS are experiencing the same things … just due to lifestyle and age.

Image of a doctor’s office

Then there are other times that I have decided that the symptoms I am experiencing are due to me being tired, or getting whatever seasonal illness is affecting many others. But when I really think about it and begin to put all the pieces together, I discover that I am having an exacerbation and I need to get in touch with my healthcare provider ASAP.

It is hard to decipher if the things you are experiencing are just a normal part of life or your MS. It is important to talk about all of your symptoms with your healthcare provider. They will take your report and also do further assessment to better define symptoms as well as if treatment is needed.

There are some symptoms that are harder to talk about than others. I have a male neurologist, so talking about my bladder or sexual issues was uncomfortable for me. My neurologist made this easier by asking me if I was experiencing any issues in these areas. If he’d left it to me to initiate these conversations, I don’t believe I would have dealt with it, but once he opened the conversation it made it okay to talk about. Once out in the open, he was able to talk to me frankly about the problems and offer suggestions on ways to alleviate the symptoms.

Remember that your neurologist is trained to be aware of all of the symptoms of MS as well as the added sensitivity of discussing some of these issues. If your healthcare provider does not initiate these tough conversations, you should. They cannot help you with what they don’t know. If for any reason your healthcare provider is not willing to hear you out or makes you feel uncomfortable, consider looking for another provider as you should always feel confident to confide in your healthcare team.

See What Stewart Says
Kim

Nurse Kim Sums It Up

Being honest with yourself and your healthcare provider about the symptoms you’re experiencing can help you both figure out if it’s a relapse or if you need a new treatment plan. And if you aren’t sure if your symptoms are actually being caused by MS, you should still share them with your healthcare provider. It can be hard to tell if what you’re feeling is MS, aging, or even a side effect of a medication you’re taking. What’s important is that you keep lines of communication open with your healthcare provider, and make sure that if something serious does come up, you’re both on top of it.

Need help keeping track of symptoms? Check out the Symptom Tracker.

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