Susan
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Susan went to a neurologist after experiencing numbness running down her neck spine when she turned her head. The local neurologist in the rural area where she lives “dropped” her diagnosis, leaving Susan feeling frustrated. Still not feeling how she “should normally feel,” Susan “kept pursuing it” and switched to a neurology practice an hour and 15 minutes away from where she lived. There she found a neurologist who diagnosed her with relapse-remitting MS after an MRI scan with a “stronger, more accurate” machine. When Susan was diagnosed, her daughters were in middle and high school; she remembers worrying “what if I'm disabled or what if something happens?” Overall, Susan’s children managed her diagnosis well, which Susan attributes to the way she disclosed her MS to them - “I didn't play it like hi, I'm going to be in a wheelchair in two years or something” – and her ability to do most of what she used to do such as attending her children’s sports practices.
Since she was diagnosed “later in life,” Susan felt the likelihood of her “being disabled” was low. She knew medication would not eliminate her MS and, with her neurologist’s support, she decided not to take medications for MS: “to me it didn't seem practical to go through all of that and some of the side effects when I'm not having huge attacks.” Though Susan has never taken any “real hardcore medication” for MS, she takes medications to manage symptoms such as muscle spasms and fatigue. She tries to take “the lowest dose possible” and not take extra if she doesn’t need it. When Susan goes to the doctor she always asks “where are the spots” so that she can know what she’s “supposed to be feeling” based on where the lesions are. She doesn’t have routine MRI scans unless she has “an incident”; though Susan would be curious to see her MRI scan results, with her “extremely high deductible” she asks herself “do I want to pay $4,000, $5,000 to say, OK, I know, there it is”? She pays out of pocket for her neurologist visits.
Though Susan’s symptoms have remained largely unchanged except for a few “episodes” of increased symptoms, they have gradually become “intensified” as she gets older; she wonders “is some of that just because I'm older or is it just my MS?” Her symptoms “all come out” when she’s “overdone it” and is more stressed or tired. She’s had a few episodes over the years including times she forgot how to walk or write for a few seconds or lost her sense of taste. Currently, Susan has constant fatigue, muscle spasms down her back into her legs, numbness, and pain. Susan also experiences restless legs with her legs “bouncing all over the place” at night; stretches help, but are “not a fix” and her legs often tighten up again. Despite the constant pain she experiences in her back - “I don’t know what it’s like to not have pain” - Susan feels lucky that with her “very, very high pain tolerance” she has “never really missed a beat”; she has managed to continue working “more than full-time” as a nurse. People often don’t realize that Susan also has difficulty focusing when in crowds and it can be challenging for her to navigate a crowded grocery store or other environments with lots of people.
When she’s not working, Susan enjoys spending time outside including swimming and gardening at her home in the country. Susan feels she just has to “learn to live with” her MS symptoms by avoiding certain activities such as being outside on very hot days. To manage her MS, Susan has adopted an attitude of “I can't change what it is, so I can't go backwards in time, so I just have to go forward in time.” Being able to “find enjoyment” in her work has given Susan purpose that helps her manage her MS and mental health. She continues doing everything she wants to do within “parameters” and tries not to worry about a future she can’t control. Susan believes having a “dialogue” with her healthcare providers is very important; she advises other people living with MS it to “make sure that the neurologist that you have, you feel comfortable with, and that is giving you all of the information.”
Susan says she would have liked to see the results of her trial.
Susan says she would have liked to see the results of her trial.
And it sounds like you didn't get any results back either about yourself or about the group.
No, but I would have loved to have seen it. And I don't know why at the end you can't, but I know it's all their secret little data that they don't want to share. But it would be– it would be a nice thing at the end of the study to know. And I don't know why you can't because look at the COVID vaccine. I don't know if you have, but I've read the study stuff online, and you can see the percentage of people and how much– what they're– I would have loved to see it. So if you can see it for that, like you see it for mine. So I would have loved to have seen a statistical thing saying these people– this number of people got GI disruptions, this number of people got these symptoms. And maybe you could Google it now and see it—I don't know—in there, because it's on the market. But I just would have liked to have seen some of that statistics.
I didn't mind sharing my data, but, like I said, I would have loved to have got something back. It doesn't– doesn't bother me to share the data. That doesn't bother me at all. No. I just– I just wish I could see something back. Just to know how you ranked or where you were, because it's like you know, it is just interesting to find out.
Susan has constant pain and numbness and tingling down her spine.
Susan has constant pain and numbness and tingling down her spine.
I pretty much always have numbness down my back into my legs. And that's kind of like-- you feel like your legs are-- are falling asleep and that's always there. Sometimes it's worse, sometimes it's better. I was having trouble with my legs when I go to bed at night, because it'd be like restless legs syndrome. They'd be bouncing all over the place, so I started taking some medication to help because it was interfering with my sleep and that has helped. For now, I can cope with them on a regular-- regular day basis and it's just a normal day. I still have them. Am I ever without pain? No, never. I don't know what it's like to not have pain.
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It goes all the way down your spine. You can feel it all the way down your spine, into your legs. That is always there. Sometimes it's worse, sometimes it's not, but that's always going to be there, I think. That's the most I deal with.
Susan actively participates in decision making about her care with her neurologist.
Susan actively participates in decision making about her care with her neurologist.
The neurologist that I have right now is the guy-- the man that diagnosed me. I've had him all this time. He left and went to [LOCATION] for a little while and came back, so I had a different neurologist and then I got him back again. So I've had him since day one and he's very, very supportive. You know it was always my decision. And he always ask me every single time, "Are you OK with this decision?" And I'm like yes. And I think the two of us together decided what is the purpose-- what would be the purpose of long-term injectables that could cause you know some side effects and what benefit would they of me? I felt comfortable with my decision. I could have always changed at any time and I still could if I wanted to. He was always very good about telling me up and coming things and what new treatments were out there and what I, you know, could take part in, and I was always willing to learn and do it. So all in all, I'm comfortable, because I feel at the very beginning, he told me I don't think that you will ever be totally disabled. And am I somewhat disabled? Maybe so. I mean, yeah, but I'm also older. So, you know, is some of that just because I'm older or is it just-- just my MS? But I'm comfortable with the decision that I made. I think it was the right decision. I think he helped guide me through that decision, so he was very helpful.
Susan had a hard time relating to a person with severe MS symptoms.
Susan had a hard time relating to a person with severe MS symptoms.
It was kind of odd. I took care of a lady, when I was first diagnosed, that was severely-- had a severe case of MS. She was in her 30s, and she was in the nursing home. And so it was kind of a weird scenario because I was going through my first diagnosis. And I was taking care of her, and she passed, maybe, a year after that or so. But she was severe-- severe, so I could watch-- she was very non-communicative. She couldn't speak. So I could watch her expression, what she was going through and sort of understand, because she was severe-- had severe case of MS, and I was just diagnosed. So it was interesting to balance that and at first, it was kind of hard because it's like-- oh, my god. This is like me, right? Like a [INAUDIBLE] but I'm not going to be quite this disabled. She was pretty. She was younger than me but extremely disabled. You know, I could understand what she was going through. I couldn't put myself exactly in her shoes, because I have not ever been as severe as she was, because she was pretty severe.
Susan recalls telling her children about her diagnosis.
Susan recalls telling her children about her diagnosis.
Well, my husband was-- was with me, so he heard the same diagnosis I heard, because we went together. My oldest daughter understood really well. My youngest daughter being in fifth grade, she understood. She just went, oh, OK, because it wasn't like-- you know, when you're in fifth grade, it's not quite in her dimensional world. It's-- it’s just a diagnosis, and it's like OK, what is that? It didn't really mean much to her, I think. I'm not going to say she didn't take it in. It's just-- she's just in a different place at that time. And my oldest was in high school, so she was worried. What did that mean? And what was going to happen to me? I think though they managed well, both of them. I think it's because I didn't play it like hi, I'm going to be in a wheelchair in two years or something. I just said, well, you know doctors think that because I'm older, it's a better chance that I would be totally functionable. And they did OK. I've never really asked my oldest daughter if that bothered her, but I knew it bothered her in some way, shape, or form. But I think they all just kind of-- as they saw me just become-- do everything that I used to do, it was a little more easing to them. So it wasn't-- it wasn’t like I had lost my sight or had to be hospitalized, because I never have been in the hospital, and I never had any of those extreme cases. So for them it was just dealing with whatever minute problems I had. And I didn't talk really much about like oh, don't because my legs are numb or something. I didn't talk about a whole lot of that. So I think they just adjusted, and they knew that I had limits. And they still know that, but-- I don't know-- I think they did OK with that transition.
Susan’s daughters had different reactions to her diagnosis.
Susan’s daughters had different reactions to her diagnosis.
My oldest daughter understood really well. My youngest daughter being in fifth grade, she understood. She just went, oh, OK, because it wasn't like-- you know, when you're in fifth grade, it's not quite in her dimensional world. It's-- it’s just a diagnosis, and it's like OK, what is that? It didn't really mean much to her, I think. I'm not going to say she didn't take it in. It's just-- she's just in a different place at that time. And my oldest was in high school, so she was worried. What did that mean? And what was going to happen to me? I think though they managed well, both of them. I think it's because I didn't play it like, "Hi, I'm going to be in a wheelchair in two years," or something. I just said, "Well, you know doctors think that because I'm older, it's a better chance that I would be totally functionable. " They did OK. I've never really asked my oldest daughter if that bothered her, but I knew it bothered her in some way, shape, or form. But I think they all just kind of-- as they saw me just become-- do everything that I used to do, it was a little more easing to them. So it wasn't-- it wasn’t like I had lost my sight or had to be hospitalized, because I never have been in the hospital, and I never had any of those extreme cases. So for them it was just dealing with whatever minute problems I had. And I didn't talk really much about like oh, don't because my legs are numb or something. I didn't talk about a whole lot of that. So, I think they just adjusted, and they knew that I had limits. And they still know that, but-- I don't know-- I think they did OK with that transition.
MS hasn’t changed Susan’s outlook on life.
MS hasn’t changed Susan’s outlook on life.
I don't know if it's just the way my personality is but I don't know that that has changed, has made me anything different. I sort of just take things as they come, and I cope as I go along. And I think that doesn't seem to be like I've gotten overly religious because I have MS or something. I don’t-- I don't see it that way. I don't see my disease as going to overtake me or running my life. I know that it runs my life in some aspects, but I'm going to continue to do everything I want to do as much as I can within my reasons. And since I know my boundaries, then I'm going to just keep doing it.
Susan recommends finding a neurologist who spends time with you.
Susan recommends finding a neurologist who spends time with you.
I'd say that find someone that makes sure that the neurologist that you have, you feel comfortable with, and that is giving you all of the information and not just-- not just treating you as-- oh, okay, here you are today and are you doing this, this, and this? okay, goodbye. I think it's more important to have a dialogue, so that-- you understand more and what's out there for you. And that isn't the case with everyone, I don't believe. And if that's not the case, I would say go to someone who would-- who can actually spend some time and talk to you about it so that you know what your alternatives are and what's available, what's up and coming. If you need support, they can help you. There is support out there for you.