Getting an MS Diagnosis
The process of someone discovering that they have MS is not necessarily straightforward. The people we talked to described feeling initial symptoms, telling healthcare providers, having tests and assessments, and hearing they had MS. Some people got diagnosed with MS soon after telling a healthcare provider about their symptoms while others were diagnosed after many years. Sometimes people were not believed by their healthcare providers, or were misdiagnosed with other conditions before finding out that they had MS.
Early signs and symptoms
People talked about when they first noticed something of concern. Grace described feeling that, "there's something going on with me. Something's not right." A few people had a sudden onset of their first symptoms while others were more gradual. Not everyone had the same first symptoms, but many people first noticed numbness and tingling in their necks, chests, backs, hands, and feet. Dina described this numbness as “like when your leg falls asleep because you've been leaning on it too long. . . but not as frustrating as that kind of strong pins and needles because my movements weren't impaired. It didn't give me discomfort or pain.” Maureen remembered, “I got like a zing down my back if I lowered my head.” Amy described feeling a vibration in her core-- “like a cell phone vibrating under your skin” - that moved down her legs.
Debbie felt confused about her “pins and needles” feeling.
Debbie felt confused about her “pins and needles” feeling.
Well, I was 26, and one day, I woke up and had pins and needles feeling in both of my feet. And I couldn't understand what was going on. I thought maybe my pajamas were too tight, or I slept funny or something. But it didn't go away. And I went on to work that day, and it was hard describing to others what was happening, because they can't see it. And I was explaining to folks that my feet didn't feel right. And as the course of the day went on, the pins and needles feeling kept moving up my leg. Simultaneously, both left and right at the same time. And so, I went home that night, and I was so confused. And I remember telling my husband what was going on. He didn't understand. We'll call the doctor tomorrow, that type of thing, and kind of blew it off. And I went to bed, hoping it would go away, and it didn't. The next morning, when I woke up, it was up to about my knees, the feeling. And at that point, I was starting to have difficulty walking. I was walking different, as I say. Still walking, but dragging a leg, stumbling, that type of thing. So, the sensation of numbing was up to my knees.
Challenges with walking were often part of how people realized something was wrong. Li noticed that she could walk, “but once I stopped, I couldn’t start again-- it's like, as if it's a battery that needed a little push . . .walking was heavy." Liz would feel electrical shocks down her legs while exercising which were so intense that she almost fell off the gym machines. Many people had decreased vision in one or both eyes, blurry vision, or double vision. Mackenzie recalled seeing double when riding a bike with a friend and Bianca, a musician, was looking at a music score when one eye “went white.” People also talked about less common symptoms, like disorientation, mental fog, slurred speech, reduced manual dexterity.
Liz struggled to stay awake.
Liz struggled to stay awake.
I wasn't diagnosed then. But I went through a phase where, for maybe a good 3 months, I was just absolutely exhausted and fatigued and struggled to stay awake throughout the day. And there are cartoons where the girl kind of gets up and flops back over in the morning. And I have always been a person that's active and energetic. And that was me. I would go to bed just exhausted. And then I would just wake up exhausted. And no amount of sleep would help it at all. And I would sleep through a good bit of the weekend as well. I mean, my family would even comment. All you do is sleep on the weekend. And during the week-- so I didn't even work full-time then. I would come home from work at may be 2 o'clock and pass out. And I would have trouble getting home from work. And I lived maybe less than 10 minutes from work. And I struggled just to stay awake long enough to get home from work. So, I would drag myself in the door and fall on the couch and fall asleep until my kids would come home from school and try to bump me. “Hey, we're hungry. You're going to get up?” And there were times I could not get myself up. So, it would be 5 o'clock. I'd be trying to drag myself off the couch and barely make it through what I needed to do in the evening for my family before I was in bed again.
Many people formed their own explanations for their symptoms or tried to dismiss them before being diagnosed with MS. For example, people attributed symptoms to signs of aging, sleeping poorly, other behaviors or more common illnesses.
Jennifer thought her symptoms might “just be a quirk of being [me].”
Jennifer thought her symptoms might “just be a quirk of being [me].”
I think, I was still chalking up to, well, you're staring at your computer for nine hours a day. So maybe your vision's blurry. Maybe you're lightheaded because you have been in an apartment for six weeks straight. And I'm sure your legs are unhappy with you because you're averaging about 400 steps a day. So, I just chalked it up to not a big deal.
Alejandro always had a reason for why he was falling more often.
Alejandro always had a reason for why he was falling more often.
Back then I was falling but I always had a reason or an excuse of why it happened, which was true. It's like I fell because I was walking. But more about I was walking and doing something else, just not paying attention. And it won't happen again. And I would do things like that. So, every time I fell, I just attributed it to the circumstances, and not necessarily to the fact that I wasn't going to clear it anyway, even if I'd been thinking only about this. My foot drop is there, and the weakness gets worse with fatigue. So, attribute it to fatigue, keep going, be more mindful next time.
It was only after they were diagnosed with MS that many people connected the dots of symptoms they’d had for many years, sometimes even going back to childhood. As Maureen reflected, symptoms “might not hit you right at that point in time, but when you kind of look back, you can see that there was progress of the disease happening." As Dulce put it, “the puzzle pieces assemble automatically with the diagnosis. Ahh, that's what's been happening over the years.”
Jason brushed off many signs that he had MS
Jason brushed off many signs that he had MS
I was diagnosed in 2014. And after learning more about the disease and what the symptoms are, I've traced my first symptom back to the fall of 2007. I used to be a runner. I would run-- I would do sprint. I ran track. I did the 400-meter dash. And then I also ran cross-country. And I'd done that for a few years. I wasn't an all-star athlete, but it was something I enjoyed. And I remember pretty vividly the-- in fall of '07, I fell while running. And it was not normal. So, I brushed it off like, oh, I fell. Oh well, people fall when they run sometimes. Then, fast forward about one year, fall '08. I was running in an intramural track meet in college and I fell during a 400-meter sprint, which was also-- that was really shocking to me. It was like, OK, now that's really weird, because I wasn't even running-- I wasn't running five miles. I was running a quarter mile. So that was weird. But again, I was an invincible college student. Nothing could hurt me. There's no way I could have a disease. There's no way anything could be wrong with me. So, I brushed it off, went on with my life.
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And then I know a girl I dated in college was studying to be a nurse. And she had to do a video clinical, like physical on a person. And I was her patient. And when she did my Babinski reflex, it was the wrong-- whatever I was supposed to do, I did the opposite. And she was like, “Oh, that's weird. That's a sign of a neurological disease.” And me being 20, 21 years old, was like, there's-- not possible that I have a neurological disease. Like, my mind works fine-- other than understanding the central nervous system and how it works. So, there were tons and tons of signs.
Deciding to see a healthcare professional
Some people we interviewed waited to see a healthcare professional about their initial symptoms. Jennifer didn't get her numbness checked out until it moved up from her toes to her ankles: "It's not like me to ignore it all, but I somehow did.” For some, the decision to seek care or follow up was difficult because the symptoms would come and go. As Grace explained, "things that would come and go, little things. And I'd go to the doctor and they'd say, ‘If it doesn't go away, come back.’ And it would go away, so I wouldn't go back.”
Rochelle didn't want to pay a copay when she felt fine.
Rochelle didn't want to pay a copay when she felt fine.
And then they wanted me to come back and see this specialist, Dr. [NAME]. And that was a $40 copay for this specialist. And I'm like, I don't know. I never really followed up with it since I felt fine. So, I did not follow up with it. And I just can't-- I came back one time, like a follow up. And then that was it.
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That was back in 2013, and I just felt like my body-- even though I still should have followed through, and went somewhere else, and seen what it was, that was because I didn't feel like it was beneficial for me to come and pay $40 for me to walk around. And I was feeling fine. Another thing they did was they gave me a prescription for therapy. And I think that was $50 per therapy. And I didn't go to that because I assumed, I was OK. And I should have probably went to another doctor. Not the therapy, but went to another doctor to get re-diagnosed, or something like that, to actually see what was going on that they couldn't find out. So, I think I would've really paid it if it was really something still going on. But because my body went back on, and I was a mother of two, I just went back to living, not even thinking that something else would happen years down the line. And five years down the line, something happened. I just assumed I would be OK. So definitely, I tell all my friends now, family, you feel something, something's hurting, go and check it out immediately. So, I just thought I didn't need it anymore. But I definitely should have just went and followed through, and got more treatment, and see what else was going on back then.
Being believed and listened to
Many people we interviewed felt as if their healthcare professionals didn’t believe them about their initial symptoms. People described feeling as if they were not understood or being taken seriously, that they were feigning illness to get out of work, or that they were hypochondriacs. Rochelle’s doctor thought her symptoms were just stress, and Liz’s doctor said she needed to just exercise more. Marquita described not being believed as a lonely process. She said, “I hated the way I was diagnosed. I feel like it took too long for me to be diagnosed . . . just trying to figure things out all on my own. And I felt like it was such a lonely process, and nobody understood the things that I was saying."
Jim felt dismissed by his doctor.
Jim felt dismissed by his doctor.
So, you know being dismissed-- you know in part, I felt you know like maybe it had a lot to do with the gender and age of my doctor at the time, and my gender and age, and with the shape that I was in you know. So, I was not-- in his mind, I was a manly man and so I-- I , at least that's the way I pictured it. That might not be a fair assessment, but that's really how it turned out.
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At urgent care, the doctor, who I didn't know, came in and said, you're fine. You're stressed. You're not sleeping. This is how I get when I don't sleep. So, I knew what I was feeling was different than when I'm tired. You know-- when you-- you know what it's like when you have trouble finding the words or something like that when you're tired. I knew it was different, but you know, I was so paranoid at that point, I wasn't going to argue with the doctor about you know, who gives me their professional opinion, so which is you know-- which is what they wanted me to do. But I really, now I know I should have really pursued it.
Li visited many doctors who didn’t listen.
Li visited many doctors who didn’t listen.
I did go to, I want to say five, no four neurologists. One of them, and this is disgusting to me that a-- a neurologist, mind you, said that it's all in my head. And that I just need to grow up. I left there crying, I’m like, I’m-- this is not in my head. Another one said that, if you just walk more, your muscles won't hurt. So, just keep walking and you'll get used to it, and then-- oh, because I also had a hard time sleeping because it was painful at night. And he said, if you keep walking and exercise then you would be tired at night, and then you wouldn't have a hard time sleeping. And I kept on telling him it hurts to walk, it's just exhausting.
There were also people who talked to healthcare professionals who listened and believed them.
Amy found a new doctor who believed her.
Amy found a new doctor who believed her.
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.
Undergoing Diagnostic Tests for MS
Before they were diagnosed with MS, many people had MRIs of their brains, necks, and spines. Oftentimes, MRIs helped healthcare professionals to see current and past lesions on the brain and spine and ultimately to make the diagnosis of MS. Some people had repeated scans over months or years before they were diagnosed.
Other tests included spinal taps, X-rays, CT scans, heart monitoring, nerve conductivity tests, myelogram, or electromyography (EMG). Vision tests and blood tests were also common for people we interviewed.
Undergoing testing was unpleasant for some people. Tiffany remembers the MRI being uncomfortable, and Raven got claustrophobic. A few people talked about fearing the spinal tap test.
Dulce was traumatized by all the tests that she had.
Dulce was traumatized by all the tests that she had.
So yeah, that initial experience, very traumatic. And I'm very resilient, but like, still, that's a lot for a person to go through. So, I can see it as an outsider. But then experiencing it, I don't know that those have really fully melded together. Because it's just too much. I just get through it. I just went through each day during the difficult week of being very medicalized and literally poked and prodded everywhere and seen everywhere, every part of my body. So it was really hard. And I can see why many people probably would stop right there and not continue with treatment. Just didn't know what to do. So, I just did it hour by hour some days and just got through it. So like welts all over, cervix, colonoscopy, CT scan with very horrible side effects of drinking the three things of chalk that nobody told me about on Easter Sunday.
Debbie found it difficult to have multiple spinal taps.
Debbie found it difficult to have multiple spinal taps.
Well, there were so many tests. At that point, it was spinal taps was the big diagnostic tool, I assume. And I had CAT scans and everything. But it wasn't until later that MRIs even came in focus for diagnostic tool for MS. So, it was mostly spinal taps.
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I remember it seemed like I was having one a day. I don't know if that's reality, but it seems like I was having one a day. I had terrible reactions to them at times. And you have to lay still after having them for as much as you can for 24 hours, which was not an issue for me since I was already having difficulty with my lower half of my body. I wasn't getting up and about as much as possible. But yeah, it was difficult going through all the spinal taps."
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But at that time, this was in 1988. This was interesting, because they were asking me all kinds of questions in an attempt to diagnose, to include, are you having trouble in your marriage, as if I'm making all this up. And are you stressed out, as if it was hysteria or something.
Julia’s first MRI caused her and others a lot of concern.
Julia’s first MRI caused her and others a lot of concern.
And then after I had my MRI, the nurse said-- because they took me to a hospital to examine me afterwards, the neurologist suggested that I go to a hospital, and that's when I had my MRI. --- And of course, they saw that I have had a lot of lesions. But then, I knew that and everything, but I really did not know what to expect. I just knew that it's going to be really bad and everyone is being very concerned about it. And the nurse, when she saw my MRI, she's like, “oh, we did not know, but you're very sick, you can't go anywhere.”
Sometimes providers had difficulty diagnosing MS and patients would receive incorrect initial diagnoses such as transverse myelitis, Bell’s Palsy, fibromyalgia or even a stroke. A few people were told they had mental health conditions, such as depression, which could be frustrating. Participants who saw different types of doctors sometimes received conflicting diagnoses which could leave them not knowing what to do. Receiving treatment in response to misdiagnoses could sometimes make things worse.
Receiving the MS diagnosis
Some people received an MS diagnosis immediately and for others the diagnosis came after watching symptoms over time. Raven’s doctor mentioned MS immediately because of her optic neuritis, and Jason remembers how his doctor “basically watched me walk in the door and was like, 'Yeah, you have MS.'” whereas Kelsey also described being in an ambiguous, "maybe I have MS,” space for six months. {See Reactions to the Diagnosis for people's reactions to receiving an MS diagnosis.}
Kim’s neurologist was optimistic about his prognosis.
Kim’s neurologist was optimistic about his prognosis.
And I was struck at the time that he was just so optimistic about what my prognosis would be and said that he didn't expect it to change my lifestyle at all. It shouldn't impact my career trajectory, shouldn't get in the way of anything that I want to do with my life. And he also said that he was optimistic that there would be a cure within my lifetime, which at that point was a really nice thing to hear. Who knows, right? We can never tell, but I guess the research has come a long way.
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My first appointment with the MS specialist was so useful. I heard that message exactly, that this disease used to be a disabling death sentence, and it is no longer that. And if I had known that from the start, it probably would have saved me some panic.
Some people had others with them when they were diagnosed, while others did not. Alejandro said, “So as soon as I heard MS, I said, OK, this is something we probably want to hear both of us together” and brought his wife along to the appointment. Kim was with his girlfriend when he found out and feels “I was fortunate that I wasn’t alone . . . [It was] nice to have that support of someone else who was equally frustrated” by how long the diagnosis had taken.
Liz didn’t want to bring her husband along to hear the diagnosis.
Liz didn’t want to bring her husband along to hear the diagnosis.
He was pretty sure that that's what it was, that it was MS. We at least had somewhere to go. I at least had some direction in which I needed to go. I kind of told my husband at that point that I might have thought it was MS, but neither one of us really knew much about MS or what that meant. And so, the doctor, the neurologist, would call and say, you need to come into the office. We need to do this. You know, we need to talk about this. And he wanted me to bring my husband with me. But I didn't want to bring my husband, because it just sounded so grim. He wanted me to come into the office. And I'm like, well, I'll just go by myself. Because I'll deal with things first and then kind of fill my husband in later. So, it was kind of strange. He said that there's a few things. First of all, he was questioning why I didn't bring anybody with me. But he didn't know me.