Specific Symptoms
People described the MS symptoms they have experienced or are currently experiencing. People talked about symptoms being on a spectrum from a little inconvenient to debilitating. Common symptoms include changes to mobility, difficulties with thinking and speech, numbness and tingling, nerve pain or nerve damage, fatigue, changes in vision, and urinary problems. Other reported symptoms included headaches, vertigo, bowel issues, and muscle spasms. More discussion of many of the common symptoms is included in the sections on Changes to personal life and home and Managing MS.
While many people described numerous and severe symptoms, others had periods of "remission" when they would not experience any major symptoms, and some people were generally not particularly affected by symptoms.
Changes to Mobility
Changes in gait, foot drop, unsteadiness, imbalance, and tripping or falling while walking were some of the most common symptoms participants described. Liz described her foot drop as feeling “like I'm dragging my leg along. So put a 40-pound toddler-- a little kid might hold onto your ankle-- and they're pulling on your foot. You can't raise your foot the way you want to.”
Jim struggles with keeping his balance.
Jim struggles with keeping his balance.
It's really easy for me now to get disoriented and then lose balance and things like that. Like I can’t carry you know, I have to have the kids carry-- or now, they're older, but I had one of my kids still that’s at home-- carry when I make a cup of coffee, or have a bowl of soup, or something if I'm in a different room, or even to the table-- have him take it from the microwave to that spot because I can't do it without spilling it. So there's certainly that.
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Balance is an issue around the house, changing directions, stuff like that. The other thing about changing directions is my feet-- at least my right foot-- doesn't always follow the rest of my body. And so, it's not uncommon, if I have to change directions, to stumble. But that's usually the reason as my foot might drag a little bit. It just takes a lot more effort to get my foot – my right foot up off the ground. So that's an issue there. So longer distance, like when I walk my dog, we just do laps around the outside of the house. But when I do that, that gets-- after maybe four times, it gets pretty difficult for me. And that's related to that strength. Right-- I just can't muster up the strength in my legs anymore. But standing still, then I have balance issues if I turn, if I turn too quickly, or something like that. So it's a little bit of both, but in different contexts.
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But you know-- but an overall strength issue-- I still don't you know-- I don't have good strength anymore. But not only that, but I can't really lift things because it throws me off balance so easily. So, it just makes it really tough to do stuff like that.
MS has affected Alejandro’s walking.
MS has affected Alejandro’s walking.
I have balance issues, and I have the foot drop. I can still walk. I can still walk unassisted for short distances. In fact, I could probably walk 10 minutes without much problem, outside, without the use of assistive device. But if I do that, I prefer not to talk to anyone, not to be holding anything in my hands, not to be thinking of anything else other than my walk.
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But if I wasn't doing that, I would be running a risk of getting fatigued very quickly, falling, and just cognitive distortions that come with fatigue. And that could be like just a little bit of a feeling of I don't know where I am or I don't know where I'm going to get, a bit of anxiety building in quickly.
David R. describes feeling like “gravity had changed”.
David R. describes feeling like “gravity had changed”.
I felt almost as if gravity had changed, that there-- I was just-- there was more gravity pulling me down, or that there was like an internal weight.
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I had the difficulty walking around work-- that I would walk around but that, like, one leg might drag a little bit. I might be more prone to trip and fall, that sort of thing.
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The main thing is that my gait is pretty much affected. My right side is weaker and less responsive than my left. When I climb stairs, for example, I have to climb one step at a time. So, I can't, you know-- I can't take my right foot-- I can't take my left foot, put it on the step above, and then take my right foot and put it two steps above.
Numbness and Tingling
Numbness, tingling, and “pins and needles” in the legs, feet, or arms was often the first symptom people noticed. Elaine recalled, “I couldn’t even wear shoes right. Like slip-on shoes I’d walk out of because my feet were kind of numb and tingly.” (See Early Signs and Symptoms).
In some people, numbness continued to be a major problem. Marquita had numbness in face that changed her smile. The numbness in Jennifer’s toes acts as a permanent reminder of her MS. Debbie lost some sensation below her chest and sometimes feels a tightening around her legs that impairs her ability to walk properly.
Debra C’s leg numbness led her to believe something was wrong.
Debra C’s leg numbness led her to believe something was wrong.
Even though I could walk, you know it was just weird to you know reach down you know and put your hand on your leg or that, but you know you're doing it, but you don't really feel it. And it's just it’s just an odd, a really odd feeling. You know, you can't describe it, because it's just-- you know and I would be like, if we're sitting at a table and you know everybody's feet's under the table, you know it's like, I would have my foot on top of somebody's foot and I didn't even know it. You know and they would say something you know like, "Get your foot off mine” or something. You know and I'm like, “Oh, I'm sorry.” You know, so I was like, yeah, this is not good. So there, you know I just was kind of like, OK, I don't know what's going on, but something really is wrong now.
Li has intense and persistent tingling in her torso.
Li has intense and persistent tingling in her torso.
But the tingling, where I would feel tingling like, I'm in my, it's always my right side. Don't know why. The right side of my body, what is this called? The body torso; all along like, all the way to my under arm and then down my legs. And I just couldn't make it stop, and it was just, it would come and go, and it got to the point where it was really bad. When I couldn't even put clothes on. Clothes would bother me because they’re touching me. And-- and so in order-- I can't go around naked, obviously. So, the only thing I could wear is things that are super, super tight. Like, long Johns that are really-- well, now they may they make them nowadays not like it when I was a kid. But like, the really thin material, but they're really tight on you and stretchy. So, I would, that's what I would wear 24/7, and then clothes on top of that. Because the feeling of the clothes rubbing on my skin would be less. You still feel it, but you don’t feel it as much. And it’s just a weird sensation, it's so disturbing that there’s nothing you can do about it. You can’t, like it hurts. It's just like, that's the only thing I can say it's like, so bothersome. That it hurts, it's just, you know, I hate that feeling. And now, when I do get just a little bit of a feeling, I'm like, oh, my God. Please please, please, like make it go away; make it small; make it like, every once in a while, I get-, I still get that, you know. Underneath the arms and underneath, but it’s never as severe as, you know, when-- I had it twice, where it was really bad. Where even clothes would hurt.
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.
Changes to Thinking, Memory and Speech
Brain fog, difficulty finding words in conversation, memory loss, and changes in speech were also common symptoms. For Jean, losing her memory felt like she was losing part of her identity.
Linda’s husband, Jerry, shared that Linda tends to be more confused in the morning than later in the day.
Alejandro has difficulty with memory and word recall.
Alejandro has difficulty with memory and word recall.
I have memory issues. And those could be described as you told me something once. I may forget it, so I write it down. Names, it can happen. It can also happen that if you ask me a question I'm not prepared to answer and I'm answering on the go, it may be that, in the middle of the question, I forget the question in the middle of the answer. And then it will happen that I will change words. So, we could be talking about a car, and I may just call it something different. And normally it's something related to car, it could be whatever. It could be a box with four wheels. You communicate whatever you think that is going to get across. That's what I do.
Kara deals with brain fog and challenges with her memory.
Kara deals with brain fog and challenges with her memory.
My fatigue is just-- is just-- my, my brain fog is what it is-- more than anything. It's like I'm fatigued mentally, like, physically it’s not bad, and-, but, mentally I'm just like-, and I could just have to like-- even if I close my eyes and just chill out for like, you know, a couple minutes, that helps significantly. It's like my eyes get over worked for my brain, and it causes mental fatigue.
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My forgetfulness, oh my gosh, I forget everything, especially towards the end of the day. I'm like, you know, you just walk in a room, you're like, standing there. I do that constantly; I mean that’s just, you know. I-- I've been that way before, but it's just a little bit, you know, more evolved. Like, I'll bring all my stuff out to the car and go to work and just be like, [PAUSE] and I'll just stand there. And I'll just go and I'll have to go back in. I mean, that happens almost every day, and I'm just like, that's just what it is, and I've gotten used to that. But the-- towards the end of the day, yeah, my memory is just garbage. Like, we just-- I feel like I've used it all up, and so it's like, OK, it's time to go to bed-- kinda reset everything again.
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But also, I-- with MS, I've learned my-- I get angrier faster. Like I have a-- I get frustrated easier. And I've been working on that. And, like, whenever I forget things, I'm like, oh my god, I get so aggravated.
Rhonda compares her cognitive issues to "playing the word game".
Rhonda compares her cognitive issues to "playing the word game".
The confusion, the cognitive issues. I can't remember what I'm doing when I'm doing it. I can't remember where I put anything. I spent an hour this morning looking for my glasses that I already had. The trying to remember the word thing. I always call it playing the word game. We're playing the word game today. I think we all do that with MS. I don't have the ability to engage in activities as long as I did.
Nerve Pain and Nerve Damage
People also talked about experiencing nerve pain and nerve damage which for some people was intense.
Dulce has two different types of nerve pain.
Dulce has two different types of nerve pain.
So, I would say I have two different types of pain. I have a low level of constant pain every single day. Muscle spasms, that's one type of pain I have. It's in my-- mostly my upper left extremity, my hands, and my bicep. So, if you've ever lifted weights and your muscles feel sore after? It's like that all the time. And then if I overuse my left hand, it hurts. And then it gets into nerve pain, lightning bolts of pain. And I get those in my legs and my feet. And then some recent episodes of pain that were unrelenting since this relapse started-- nerve pain, but not zingers and not lightning bolts, steady, constant nerve pain for six hours plus, like unrelenting. Or at one point, I-- thankfully, no one was here. The dogs were-- just started crying because I didn't know what else to do. I couldn't sit. I couldn't get comfortable. Nothing, nothing would help. I mean, I tried just about everything I have. Not all at once, because you don't want to stop breathing. So yeah, the nerve pain is just very acute and unpredictable in its duration and sting. And that's less common. That's more when there's an exacerbation. So, for this, it was some infection. Or if I've had a really long day, or if it's really hot, I'm more inclined to have nerve pain if I'm really tired.
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
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.
Other symptoms
Other MS-related symptoms included headaches, muscle spasms, vertigo, changes in bowels habits, chronic pain, and weakness.
Karen experiences bad outbreaks of vertigo.
Karen experiences bad outbreaks of vertigo.
So that is very sporadic too. The worst times that I’ve had it, I’ve been bedridden because just even being upright, I’m so nauseated, I can’t function.
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But [um] if you’ve never had vertigo, it is not fun. It feels like you’ve gotten off—you’ve just stepped off of a roller coaster that maybe had a bunch of loops in it. You just, every time you get it, it’s just awful.
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When I have a vertigo outbreak, I mean, I can’t, I can hardly function. I can hardly get out of bed. So, you know, definitely it’s hard to deal with some of the symptoms.
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And I’ve had it worse sometimes than others. But there have been times where it has bedridden me for a couple days. And I’m allergic to the medication they give you to help with some of the symptoms. I can’t take it. So that has been [LAUGHING] a little bit difficult too when I do have a bout of bad vertigo.
Makenzie describes the ‘MS Hug’.
Makenzie describes the ‘MS Hug’.
It's like kind of constriction on your, like wherever. Like it can happen wherever, but mine happens like in my chest and my stomach. And it's really, it feels like you're just squeezing something super hard. And it, yeah, I don't know why they call it a hug, I guess just because you're squeezing. But, yeah, it's painful. It's like your nerves just go crazy for a little bit.
Rhonda has severe and frequent muscle spasms.
Rhonda has severe and frequent muscle spasms.
A lot of it is spasticity. And I have, like, a Charley horse spasm that'll go from the glutes all the way down to the foot in the middle of the night and wake me up. I have a permanent spasm. Like I said, would be spasticity in my right hip. And it makes it difficult to balance. I use a wheelchair. I have a hard time washing my hair because I can't lift my right arm very high.
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I have, not the vibration down the neck, but when I turn to the side, I have vibration down the shoulder, and sometimes like a stabbing knife. That's every day.
Marquita developed a stutter.
Marquita developed a stutter.
My speech isn't like it used to be. If I feel-- if I'm speaking to somebody about health, about MS, I feel like I could speak a whole lot better than if I'm speaking to somebody who is not aware of my illness. And I'm trying to shade it, trying to pretend like it's not there. So, it feels like it's more pronounced. You know?
I've never been the kind of person that stutters. I've never dealt with that in my life. But I feel like since having my major flare, that I've dealt with that at times. And when I speak, when I do speak, I feel like I have to think about every word that I'm going to say before I say it.