Multiple Sclerosis

Amy

Age at interview: 56
Age at diagnosis: 50
Outline: Amy was diagnosed with MS after experiencing swelling in her feet, vibrations that began in her core and traveled down her legs, motor troubles, and generally feeling like something was wrong. Amy felt dismissed by her doctor and sought out a neurologist for a diagnosis. Her current symptoms include nerve damage on the left side of her body, “brain fog,” and some motor issues. Amy attributes her diminishing lesions and stable MS to exercise and diet. Overcoming physical challenges such as the inability to walk without a cane and having success with hula hooping made her realize that she actually could have a say in what was happening to her. Amy believes her life is better now than it was prior to her MS diagnosis.  
Background: Amy is a mother of three and grandmother of two. Amy spends her time hula-hooping, teaching fitness classes, and volunteering as an event teacher at local libraries. Amy loves working with people and watching them get healthy. Recently, Amy has begun to practice meditation to quiet her mind and focus on the present. Amy identifies as a heterosexual White female.  

See full story

After experiencing swelling in her feet and feeling like something was wrong, Amy went to her doctor but because X-ray results did not reveal any issues, the doctor told her that she was fine. However, Amy continued to feel that something was wrong and made an appointment with a neurologist. Prior to the appointment, she began to feel a vibrating sensation under skin that began in her core and traveled down her legs and started using a cane. A head, neck, and full spine MRI showed lesions on her spine and Amy was diagnosed with transverse myelitis.  

After her diagnosis, Amy went into the hospital and began Solu-Medrol treatment to bring down the inflammation. Later, a spinal tap indicated MS and a second opinion confirmed that Amy had MS. Amy wonders if an earlier diagnosis and treatment would have decreased residual nerve damage that she currently experiences in her left foot. She attributes her delayed diagnosis to her identity as a woman and the assumption that her symptoms were not real.  After her diagnosis, Amy sought information about MS online and decided to manage her MS with food and exercise. Being diagnosed with MS has spurred a lot of positive changes in Amy’s life, including a strong focus on nutrition. Although she took Copaxone for two years, Amy is no longer on any disease modifying therapies for her MS. She no longer uses a cane to walk and her lesions have diminished.  

Now, Amy has subtle symptoms, including, most notably, left side nerve damage. Her current symptoms included diminished sensitivity in her left foot, a vision disparity in her left eye, issues with her left hand, and brain fog. Amy’s current health team consists of a functional medicine doctor and a chiropractor. She takes Vitamin D supplements and meditates to manage the psychological aspects of her MS diagnosis. For Amy, “MS was a blessing” because it forced her to reassess her goals and priorities. She loves listening to people’s stories, and sharing her story. Sometimes, Amy feels sad that her youngest daughter grew up with a sick mother but she has seen the best Amy has to offer and the worst of Amy as well. Amy hopes that her daughter sees that she conquered and  
changed a lot, which is what matters.  

 

Amy found a new doctor who believed her.

Amy found a new doctor who believed her.

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

And it was a young guy. He was super nice. And he said to me, he goes, “What are your symptoms?” And at this point, I'm like, “Are you going to listen to me if I tell you what my symptoms are?” He stopped. He turned around. He sat-- you know, just put his hands in his lap, and he looked at me and goes, “Of course I'll listen to you.” And I thought, oh my god, somebody is going to listen to me.

 

Amy felt sense of loss related to the uncertainty about the future.

Amy felt sense of loss related to the uncertainty about the future.

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

And I wasn't just going to take the news and lay down. So, it was sort of a mixed bag. We did a lot of crying. And I did a lot of late-night Googling. We did cry about it, because it's a loss. Because much like COVID-- I'll equate it to COVID. Could I do that? It's a loss because you don't know what tomorrow is going to be like. You don't know if you're going to be sicker. Like COVID, you don't know if you're going to walk out and pass the wrong freaking person on the street. I mean, because we don't know enough about COVID. Nobody knows enough about autoimmune diseases that you kind of wonder, am I going to be the lucky one or the not so lucky one? So, my whole-- you know, I call it my arsenal, my tool belt of food, mind, health, movement, all of that is because I don't know what tomorrow is going to bring. And so, I think that was the scariest part. Even though I was like 50 pounds heavier, obviously out of shape, I couldn't necessarily run with my kid then. But it's the whole that it might be taken away from me that you kind of go, wait a minute. You know? What can I do to-- you go through loss. You go through that whole grieving process where you're sad. You're angry. And then I think you kind of get to this acceptance where, OK, this is it. Now what can I do?

 

Amy’s foot is impacted by nerve damage on the left side of her body

Amy’s foot is impacted by nerve damage on the left side of her body

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

And then the feeling in my foot-- I almost feel like there's a Band-Aid on my foot. It's a kind of an interesting feeling. It always feels like my foot's kind of wrapped. And when I say foot, it's my left foot, because it's my left side. So, I always feel like I've got-- and I equate it to, like, remember when pixels came out with cameras? That, like, ooh, this was an 8-pixel camera, so you had more pixels. So, I feel like my right foot has, like, a million pixels, and my left foot has 20. So, I feel like the sensitivity of it is either less or more, depending on what happens.  A sheet across my left foot doesn't feel good at all, where it doesn't bother my right foot. So sometimes it's a matter of sensitivity feeling a little out of whack, that the two feet are never the same. And then of course, if I trip, it's always on the left foot-- just always.

 

Amy talks about changing her diet to live a long, healthy life.

Amy talks about changing her diet to live a long, healthy life.

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

And so, I think the best part of it is that I know what my little subtleties are and that they remind me to behave. Really, really do. And right now, after this whole weekend with my daughter going to college, I'm like, I can't think. I feel like I can't think. And I know it's food. That's why I'm doing juice today and not over-caffeinating. Over-caffeinating, very bad. Love coffee. And so that's a rough one. And yet people ask me how I can eat like this. And I'm like, what are you talking about? You know, it's like, oh, how can you eat healthy foods? Isn't that kind of a funny statement? I mean, how can you eat healthy foods? I mean, when people say how can you eat like that, it's like I can't afford not to. If I want to live a long life and be with my family and maybe run with my daughter and do the things that I wanted to do-- because she was young when I was diagnosed. 

 

Amy discusses teaching fitness classes after her MS diagnosis.

Amy discusses teaching fitness classes after her MS diagnosis.

SHOW TEXT VERSION
PRINT TRANSCRIPT

And really for me, my history before was a teacher. So, teaching comes naturally. I'll be like, I can do that. And so, I have been teaching fitness classes. And I took a TRX class, and then I went to one of their certification modules. You know, they have a whole bunch of different ones. And then I started teaching TRX with my community. And I love working with people, watching them get healthy. People will come to me and talk to me about their stories. And I love talking to them and just sharing with people. And so, for me, actually, in the community I live in, I taught two hula hoop classes, one TRX class a week. I taught with the local libraries, but I was an event teacher. So, I would go in usually during spring break and summertime, which is great, because it's so hot here. It's great to be inside playing with kids. And then I do other things that are inside and outside. But I'm pretty busy.

 

Amy finds talking about MS to be beneficial.

Amy finds talking about MS to be beneficial.

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

But I mean, that's the thing. If you tell people what you're doing or what you're struggling with, I think sometimes when you open up a door, people walk in with good stuff. And I think that's the one thing that-- don't be afraid to tell people, because you might find out something else.

---

So, I think talking to people and not being afraid of being the victim and positioning yourself to not be the victim. Well, I have MS, and I'm kind of trying to figure out what to do with it. I mean, there's two ways to deal with it. And I think you can be here. But it's really important to take a breath and pick your head up and be here, because maybe out here somebody has got something for you. And I think that is-- that goes back to the mind game struggle. But I would just say be open to listening to people. Be open to talking to people. And then, you know, take it all in. You don't have to do this or that, but maybe this or that might be good. And you won't know unless you talk.

Previous Page
Next Page