Susan

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.”