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Nurse Kim Asks...

Finding the right healthcare provider for you is just as important as finding the right relapsing multiple sclerosis (MS) medication. Your relationship with your healthcare provider should be personal, because everyone living with relapsing MS has different needs. If you don’t feel comfortable speaking with your healthcare provider about your experiences, you might not be getting the care you need.

What have your experiences with your healthcare team been like, and what have you learned along the way?

Pam Answers...

Experiences with your healthcare team

When it came time to find Dr. Right, I did my homework.

I found out how important trust and confidence is after a short stint with another physician I didn’t felt comfortable with. So, when it came time to find Dr. Right, I did my homework. In fact, my neurologist and I recently reminisced together about the first appointment I had with him years ago. We laughed when he told me that I was the only patient in his whole career who ever interviewed him. I had to see if he met my standards! 

This doctor is still my neurologist today, and he’s the one who cared for me in the hospital. There were a couple things that stood out about him and his team:

  1. Both the doctor and his team treated me with respect and had patience with me (no pun intended!), even after many phone calls.
  2. This doctor checked his ego at the door and supported my request to get a second opinion after sensing my frustration and fear of the unknown.

He presented all my relapsing MS treatment options and made it clear that it was ultimately my decision. At first, it was maddening. I figured since he was the expert, he should pick. But in time I understood that it was important that this was a team effort. 

When I did my research, I started to understand how different each relapsing MS treatment is. We needed to talk it over. I am grateful my neurologist has given me a voice and freedom to ask questions, including those about newer relapsing MS treatments coming down the pipeline; and because he taught me the importance of being involved in the treatment decision process early on.

As comfortable as I was with my neurologist, when it came time to address any — what I call, BUS symptoms (Bowels, Urinary tract, or Sexual issues), it was still embarrassing. Why do we make it harder on ourselves than it has to be?

Routinely, I was asked about any problems in these areas, and I answered with a quick “No.” But now that I am further down the road, I wish I had done things differently. I would have asked the question, “Problems? Like in what way?”

What I thought of as normal parts of getting older, like having a history of UTIs, was most likely the start of the disease. It was recently confirmed to me that my issues had a direct connection. Who knew? Yep, the doctor did. If only I’d had the nerve to ask.

It does take nerve to ask awkward questions or voice concerns.
We make it more awkward when we don’t address the issues that need to be talked about. If only I would have been more gutsy. (Puns INTENDED)

See What Connie Says
Connie Answers...

Experiences with your healthcare team

August 13, 2018

I am lucky to have only had 2 neurologists since my relapsing MS diagnosis. Their offices are both located just 3 minutes away from my home, which is very convenient, especially when I am not feeling up to par. Over the years, I have developed a trusting relationship with both of these healthcare providers. I feel these relationships wouldn’t be possible without open dialogue. I can talk with them about whatever is on my mind, whether it be symptoms that I am experiencing or research on new relapsing MS treatments.

I know my body, and I appreciate that both of my doctors trust me to know when something isn’t right. If I said a relapsing MS treatment wasn’t working, they would work with me to see how my MS was progressing and eventually start me on a new treatment. I feel like I’m in control of my relapsing MS treatment, and that I can actively fight back against any relapses. Speaking frankly with my neurologists has helped me to focus on the rest of my life.

From bowel and bladder issues to sexual problems and everything in between, some of the symptoms that can come with relapsing MS are less than easy to talk about. Although these are embarrassing topics, they are common problems that people living with MS face and something that should be talked about with your neurologist. They will be able to offer you suggestions of how to manage these symptoms and offer reassurance.

In the past, I have referred fellow “MSers” to my neurologist. In some cases, they returned from their appointment and told me they didn’t think this neurologist was a good match for them. And that’s okay!  

Everyone has a different personality and I encourage you to find a doctor you feel comfortable with. One doctor’s style does not fit all. 

And keep in mind; this doesn’t only apply to your neurologist. You should feel comfortable communicating with all of your doctors. I was young when I was first diagnosed with relapsing MS, and one of my biggest fears was that I would not be able to have a child. Four years later, when I had put my fears to rest and was actively pursuing this goal, I changed my obstetrician/gynecologist. At my first appointment, he started the conversation by saying, “Do you know who else has relapsing MS? Me!” It gave me a sense of calmness. I was in the hands of someone who truly understood this diagnosis. We had many conversations about the challenges and quirks of having relapsing MS.

Your relationship with your healthcare providers is extremely important. If you cannot have an open, honest dialogue and trust in your doctor, don’t settle. You should seek out another healthcare provider that you can have this relationship with. Multiple sclerosis is going to be in your life for a very long time – you want to be confident that you and your medical team are really working well together.

See What Pam Says

Nurse Kim Sums It Up

Having a strong relationship with your healthcare team is a great start to managing MS. Just like treatment options, different healthcare providers work better for different people. Some people have great chemistry with their healthcare providers, while others may have trouble understanding their healthcare providers, and vice versa. Like Pam and Connie said, you need to find a healthcare team you can speak with honestly and don’t be afraid to talk about the awkward symptoms. Chances are, your healthcare team has heard it all before. Your relationships with your healthcare providers should be partnerships, not just someone telling you what to do. Are there any suggestions you have for people who have trouble communicating with their healthcare team?

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