Table 3.

Sample quotes from participants specific to relapsing–remitting MS symptoms

Participant	Quotes
Fatigue
Patient	Basically, I would wake up feeling a little tired, more than usual, and some days I had a little worse, but that's when I just started noticing, too, that I would wake up, or not wanting to wake up as much
Care partner	[Fatigue] was one of the first early symptoms. We actually went to a concert before she had been diagnosed and she fell asleep during a live concert, which we thought was a little unusual until we found out later on. She was just tired all the time and could fall asleep literally anywhere, anytime
Incontinence (bowel, bladder)
Patient	Constantly having to pee and couldn't hold it really. Like let's say right now, if I needed to go to the restroom, and I would get up and sometimes before I even got there, I would pee a little on myself, and it's like, 'What?' Like I had no control holding it, so if I had felt that I had to go, I had to go then and there. I couldn't wait
Care partner	A little bit in the relapsing–remitting phase, I think… I think she started to experience some of that [both bowel and bladder incontinence]
Numbness/tingling in hands/feet
Patient	It was like all the way down the right side. Like I was cut in half and the whole right side is numb. Feet, hands, arms, elbows, whatever, face. I had like, uh, drooping lip kind of like Elvis, you know. Uh, that was going on and I didn't know what was going on until other people told me that was going on
Care partner	She talked about numbness and tingling, uh, that she experienced. I don't think she had the numbness and tingling literally all the time, but she would experience it whether or not she was in relapse or in remission. But I think she experienced it more frequently during the relapses
Stiffness, spasms, tremor
Patient	My legs will lock up, and also I'll have like really [bad] back spasms, and then my hands will lock up… Even for a simple walk from where I live in my apartment to my mailbox, which is at least a good 800 steps away from where I live to my mailbox. That walk would be the most excruciating pain for me because my back will lock up to the point that I'm just stiff as a board, waiting for it to calm down
Care partner	Definitely a tremor. Her left leg, even to this day, if she puts it in a certain position, it will just start bouncing. The clonus will cause it to just keep going until she moves it or literally stops it with her other hand
Visual/hearing/speech problems
Patient	My vision was looking so blurry to the point that… like luckily now, I have good eyedrops for my eyes… Like literally there are times when I can't see for nothing, ma'am. Even without the eyedrops and stuff, I still see it blurry
Patient	There are time times that when I have trouble saying words or just being able to think of how words are said. Hearing, uh, my wife would say I have selective deafness
Care partner	Some vision problems, double vision I think it was
Mood swings (irritability, depression)
Patient	I hate to admit this. Yeah, there's times too that I would even push… all my family away because of my mood, and they understand that it's because of my MS. When it comes to depression, I try my best not to let it get to me and not to get the best of me. But yes, there are times that… I'll have depression. But the mood swings is what I'm like, 'Wait a minute. Why am I feeling this way?'… I get so angry. Then I get so sad. And then it's like 'Oh my God. What's going on with me?'
Care partner	Just like mood swings. Like bipolar-ish kind of mood swings. That I couldn't understand where they were coming from and now my current understanding is that that's not so uncommon with MS
Cognitive dysfunction
Patient	I mean, I was vice president at a bank and I just couldn't even get it straight anymore. I used to manage pension plans and 401 K plans, and I couldn't even… I got to the point where I couldn't balance my own checkbook… I can remember 10 years ago but I can't remember 10 min ago
Care partner	She's a very smart woman who had a responsible job and dealt with a lot of different people and different things and that all just kind of slowed down
Problems with walking, coordination, balance
Patient	It [weakness] was [in] my left leg. I'd say within 2 to 3 years, [I] was dragging it really bad with a walker. I'd have periods where I'd get better. I was in a wheelchair, and I came back out of the wheelchair with a walker. I'd go walk with a cane, but then I'd go back to a walker
Care partner	As I recall, it first started affecting her walking. She couldn't walk quite as far as she used to. It wasn't like it was like boom, but it would just slowly gather up over time. It would get a little worse and worse to where she was like unsteady. And so there was the transition to a cane, to a quad cane, to a walker
Temperature sensitivity or regulation difficulty
Patient	Well I did get cold very easy, but myself… it could have been like maybe, let's say, 70 degrees outside and I would carry a blanket with me, like a small blanket, just because I do get cold very easy
Care partner	Yes, definitely temperature sensitivity. The relapses all seem to center around her getting too hot. So, yeah, the heat just… like, any level of additional heat beyond a certain point causes her discomfort. And then, if it is sustained, that seems to have been what triggered the relapses primarily

Participants also reported other symptoms, including cognitive dysfunction, dizziness, paralysis/numbness, reduced interest in or ability to engage in sex, sleep problems, hypersensitivity or reduced sensitivity of skin, and nerve or musculoskeletal pain