Establishing and Coordinating Care
The process of finding a neurologist, MS specialist, and a care team was an important topic of discussion. Some people talked about choosing to switch providers and their reasons for doing so. People with multiple providers discussed how receiving care often demanded a coordinated effort between these providers.
Interactions with Primary Care Providers
For some of the people we interviewed, their primary care providers played an important role in their MS diagnosis. When Jean went to her primary care physician with complaints about electrical impulses from her neck down to her leg, her primary care physician referred her to a neurologist. Grace recalled the initial difficulty of going to internal medicine doctors and general practitioners with her symptoms, saying, “I think at that time, it was really hard. Because how do you go to a doctor and say, ‘Well, I can't move my toe.’ It seems like such a stupid thing to complain about, but I think what-- with the MS people who have MS, they know that something's up.”
Mercedes didn’t initially feel heard by her primary care physician.
Mercedes didn’t initially feel heard by her primary care physician.
I was frustrated that she was listening to me-- my PCP was listening to me, but she wasn't hearing me. And I-- you know, you know your body well. You know your body best even though you may not be a physician. You know how you feel and how it impacts your daily living. And so to have to come back to her consistently, and make-- schedule appointments, and pay for those appointments was you know a little disheartening and frustrating. But eventually she caught on and she caught on with who I was as an individual. And so once I had appointments after having seen the neurologist and obtaining a diagnosis, she would you know, she would come to our appointments with articles. She said, you know I found this article that I know is pertinent or-- or you know relevant to your situation, and I know that you're really into research and you're really into reading, so I thought this might be a great article for you to review or to read. So I appreciated that of our interaction and her care, but it was frustrating-- frustrating in the interim.
After her primary care provider thought she might have MS, Jennifer found a neurologist.
After her primary care provider thought she might have MS, Jennifer found a neurologist.
INTERVIEWER: What was it like to find your neurologist and to find a care provider?
My journey was actually pretty easy. Like I said, I went to my nurse practitioner, general doctor, and she suggested that it may be-- and we did the MRIs. And then, when the results came back, I knew the health system I wanted to go to, it’s where I had already had some of my other specialists. So, I really just called them and said I wanted to speak to a neurologist, and they asked why. And I said MS. They sent me to the MS clinic, and then I lucked out, and my doctor is actually the head of the MS clinic, which is a delightful, happy accident. But my journey was actually pretty easy. I know not everyone's that lucky.
The involvement of primary care providers in people's ongoing MS care varied widely, from almost no involvement to primary care providers being active participants on care teams. Mia described her primary care physician as her “go-to” and a “co-captain” in her MS care. Jennifer said she liked the ability to go to her internist with MS-related questions when her neurologist was not available. Kelsey’s primary care provider was very quick to refer any MS-related questions to either of her neurologists, and Linda said her primary care physician was not helpful for her MS symptoms because “it is not their expertise.” David R. said, “I wish I could find a primary care doctor who is a little bit more attuned to multiple sclerosis and dealing with it.”
Makenzie’s primary care physician was not involved with her MS care.
Makenzie’s primary care physician was not involved with her MS care.
She doesn't feel comfortable at all like talking about any symptoms or anything. Every time I ask her to do something, she'll just kind of be like, "Talk to your neurologist, like I know nothing." And I appreciate the honesty. Like I appreciate it. And she helped me like get my medical marijuana card and just because I was seeing doctors out of [LOCATION], so I had to see her because she was in, so-- but she's pretty good. Like she’ll just, she'll ask me how it's going, but she doesn't want to like get into it too much, so-- I have a pretty good relationship with her though. I'm just, yeah, it's just not like care that I, I don't know what I'm trying to say. I guess like I don't go to her too much for any issues other than like colds or whatever, so.
Finding a Neurologist or MS Specialist
People described how they found their neurologist or MS specialist. Some got recommendations from family, friends, other providers, or even loose acquaintances. Amy commented, “I think it's really important to talk to everybody you know.” For Dani, the process of finding a neurologist was difficult because insurance limited her choices and she did not receive any guidance from her primary care physician.
Alejandro finally found a neurologist he felt comfortable with.
Alejandro finally found a neurologist he felt comfortable with.
I started figuring out who I was going to see next because I didn't want to go back to the first neurologist. So, I found another one. I found another one who was not a specialist in MS and gave me good advice to go to my current neurologist MS specialist. I met somebody who's really oriented to treatment, both in MS and symptoms. That's my current doctor. So, when I saw her, she was so what I needed, which was I needed a treatment and I needed somebody to talk to about my symptoms and just the day-to-day. Again, I think it's specialized in doing that. So that was, I think, January. So, going back to September of 2017, when I got diagnosed, then a few weeks to go through the [INSTITUTION] process, and then, finally, getting in to seeing somebody that I felt comfortable with. That was in January of 2018. Yeah. January 2018. And during the meeting, and going over potential treatments, that's when we picked—well, I picked the treatment, but I thought it was a great choice.
Some people saw talked about the importance of having an MS specialist rather than a general neurologist. Rhonda shared, “I kept fighting to see an MS specialist. And at year 25 of my diagnosis, I finally got to see an MS specialist and finally got decent treatment.” Debbie stressed how important she thinks seeing an MS specialist is: “If you are an individual with MS and are just seeing a general neurologist, your life could change by just going to this specialized MS clinic.”
Makenzie had a hard time finding care in her rural area.
Makenzie had a hard time finding care in her rural area.
Yeah. I live in a very rural area, tiny town, like 1,200 people. So, the nearest hospital is 20, 30 minutes away. And it's just not-- there's one neurologist, and they just got her like three years ago. So, I mean, we were just like confused about where to go. But the quality of care here is a lot different than down there. I mean, it's just night and day-- which I think says a lot about like the rural healthcare system. It's just not, I mean, some people just don't get the care that they need here.
INTERVIEWER: Mhm.
So, yeah, and this area is just very like, I don't know, it's very weird. It’s not, there's no like healthcare system that I can just go to and be like, hey, I have neurological issues. I need to be seen. You have to be on a wait list for like six months to see her, and it's just, it's not good. So, my husband and I want to move, for sure, somewhere closer. But this is where we are right now. So, driving to [LOCATION] isn't really too big of a deal, so. It's just not a great area for healthcare, I guess.
Deciding to Switch to a New MS Specialist
People shared their reasons for seeking out a new neurologist or MS specialist. For some people, it was about the relationship with the provider. Rhonda switched to a new neurologist because “I still kept relapsing. She kept ignoring me.” Dev decided to go to a different healthcare institution where he felt people understood MS better. Fred wondered if he should switch because his neurologist “didn’t always sound like he was super confident” but ultimately decided not to switch because “it was somebody I knew.” Others switched providers for logistical reasons such as geographical convenience or a specialist leaving a practice. When her MS specialist transitioned to a larger, more corporate practice, Karen felt the quality of care she received started to diminish and she ultimately had to find a new provider.
Nora decided to leave her neurologist after they didn’t share information with her.
Nora decided to leave her neurologist after they didn’t share information with her.
And I saw my second neurologist. When I saw him give a presentation, he was very knowledgeable, very forthright. I'm going, wow. And my nurse and these other ladies recommended him. So, I left the first neurologist, because one, she didn't show me anything about that MRI, which is the diagnostic tool. And she just wasn't encouraging. And she didn't have a lot of information on MS. Because when I would ask her some questions, she would just say, “Oh, go to the website, or do this, do that.” So, I really wasn't happy with her.
Kim prefers seeing MS specialists over general neurologists.
Kim prefers seeing MS specialists over general neurologists.
The person who first made the diagnosis who was the neurologist that saw me in the emergency department was not an MS specialist. I mean, she was very nice, too, but I'm glad that I have MS specialists to see. For me, it's just like someone has dedicated their career to this disease, and it's nice to know that they are really knowledgeable, and they know. They have seen many other patients in different trajectories and can use all of that experience towards my care. So, I think I'm really fortunate to have them on my team.
Dani decided to prioritize her doctor’s approach to treatment over their likeability.
Dani decided to prioritize her doctor’s approach to treatment over their likeability.
And the doctor that I was with at that time was very positive about it, very like huggy, and we'll get through this together. And she gave me all these beautiful pamphlets of medications. And she was just kind of like, choose one, choose what you like. And I was like, this is great.
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And at that point I was kind of just thinking I hope we caught it early. And she seems really chill about it. So, I was thinking it's not-- maybe it won't be as big of a deal as I thought.
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So, I think it all came to a head one day when I was going home, I remember going to my bedroom and I just kind of collapsed. And things just blacked out. And I was just dizzy and seeing two of things. And that's when I called my mom and I was like, “I think something's seriously more wrong than what she's saying.” And I ended up going into the hospital and staying there and getting a round or two of Solu-Medrol. And I remember one of the doctors-- it's all kind of a blur, but one of the doctors told me that I needed to change doctors and get someone who is serious. And I was like, what do you mean? And she was like we did MRIs, and we did an MRI of your spine. And if you don't get on to a different treatment plan you could be not walking by the end of the year. Or she listed off all these awful things that I didn't even know was possible with MS. And it just kind of kicked me into gear and I was like that lady was hugging me and telling me things were great. And now I'm going to be in a wheelchair, which at that time I thought was the worst thing that could happen, which it's not. But in any case, I got a new doctor. And he was pretty much-- he put me on Tysabri right away. Which I thought was really drastic, but he's like you have to. And so, I did.
Tiffany switched to a new MS specialist since her first one wasn’t very helpful.
Tiffany switched to a new MS specialist since her first one wasn’t very helpful.
I have an MS specialist that is in my local hospital. He's about 30 minutes away. And I think he's the only one in the area that is more up to date with MS. And he helps treat the adults. Because when I used to see the [INSTITUTION] MS specialist, he was pediatric and he wasn't very helpful. He didn't know the new medications that were out. And he just gave me the old ones that he was familiar with. But with my new MS specialist, since he goes to all the meetings and he's well aware of the recent medications for MS, he's helped me come up with a new medication after my relapse. And he's the one who came up with Kesimpta© for me and the medication has been working pretty well.
Dulce switched to a different neurologist who was an effective communicator with her.
Dulce switched to a different neurologist who was an effective communicator with her.
The physician really didn't want me to go on Copaxone©. They were kind of pleading, but not in a way that she did with her skills. Because that's just what she does. That's her thing. And she really didn't want to see me get worse. Anyway, so yeah, they didn't want me to go on Rituxan©. I was like I'm overwhelmed-- or on Copaxone©. I'm overwhelmed. I need to tap out. I've had my body medicalized. Everyone's poking and prodding me. I don't know what's happening. I need some time. I promise I will re-evaluate. So, they only gave me like a six-month prescription for Copaxone©. Because they were like, we don't really want to, but we get it. And I was like, OK. And then I changed because I had somebody who met me where I was at and spoke to me in a way-- I mean, she knew how to read me, so that's what I needed.
Coordination of MS Care
Care teams often included any combination of primary care physicians, neurologists, MS specialists, mental health providers, physical therapists, physicians from a range of other specialties and/or care coordinators who assist with the management of a patient’s condition(s) and treatment plan.
Alejandro benefitted from having a care team.
Alejandro benefitted from having a care team.
But that help from the neurologist, even when she tried her best, was really not enough. And it would not have been enough. Because at that point in time, I needed the help of many. It was only with the help of many that I started to change things around. And then I changed in a good way. I do feel that if you have a professional team, if you've got one person, and that person connects you to another, then that's a good start. But even sometimes, it's even difficult to find that one person. And even when I thought that one person was doing everything for me, I think that would have been fine. That could have been fine. Right? There's nothing wrong with that. But it didn't work for me. There was a point it didn't work for me. And there was candor to me. So now I think about teams. And it's not that I need to hear it from one or a second or a third opinion, it's really not about that. It's really just about being able to have that conversation and ask more questions.
Kim shared that he sees two MS specialists who share their post-appointment notes and MRI reports with each other, allowing him to feel very reassured after each visit. Nora was glad to find a single facility where she could see her other specialists in addition to receiving her usual MS care. For David R., adding a physical therapist to his care team led to the identification of bone loss and an osteoporosis diagnosis. Jean expressed disappointment that her neurologist didn’t refer her to physical therapy and she had to go seek that out herself.
Liz feels that her care team is effective because they are communicative.
Liz feels that her care team is effective because they are communicative.
So, there is the MS specialist, and he has his staff, so his nurses and so forth. The medication that I take now is an infusion. So, I'm fairly close with the infusion nurses.
I have a couple different physical therapists, an occupational therapist, my family doctor, who kind of coordinates and keeps everything together as well. And then I just have all my doctors. So-- I have the eye doctor, who does their aspects of it and keeping in touch with the neurologists and so forth, whether it was that depth perception and how MS does change-- it can change, I should say, your vision as well. So, you know, that's his specialty. So, he keeps track of that. But I just have a wide array of all your different specialists and doctors and everybody I have to say, for the most part, coordinates together should there be an issue and so forth.
INTERVIEWER: And how are they connected to each other? Are they part of a specialty clinic, or are they just through you connected?
At this point, most of it would be through me other than actually with the MS, so the infusion nurses and the MS nurse and him. And actually, the MS Society is connected with them as well. So, all of those and, actually, the physical therapists know, too. So, they're all, for the most part, connected. And then through me would be the other doctors, whether it's a dermatologist or the optometrist.
Dani wishes her healthcare providers had better communication with each other.
Dani wishes her healthcare providers had better communication with each other.
It would be nicer to be able to have better-- I don't-- I kind of have a primary care doctor. But it's not like-- she's not as involved in my care. They're not the doctor's office that's going to call and figure things out with my neurologist and my hematologist. And I really need my primary care doctor to be the glue. And I don't have that. And that's just unfortunate. But hopefully if I can one day move, that is something I'm going to look for in a city is what's their care systems like? Is there a facility that has everything under one roof? Because that would be amazing.