The Joy of Getting an MRI

That title is extremely sarcastic, folks! While many of us with Multiple Sclerosis have a wide range of symptoms, there are certainly a number of things we have in common. For instance, we spend a lot of time inside MRI tubes. No, really, like a whole lot of time. Most folks with MS will end up getting a yearly MRI, many will even get them every six months or even more frequently (so much, it’s often joked that MS stands for “Multiple Scans”). If you haven’t gone through this, you might be tempted think, “So what, that’s not that much, you lay there, they scan you and it’s over. Easy right?”. Well, for those who think that, I want to talk about why our times in a MRI tube can feel like something to lose sleep over!

Why do we need MRIs?

Magnetic Resonance Imaging is a tool used to generate images of the body that uses magnets and radio waves (and no radiation!). It’s become the go-to and least invasive way to detect lesions (which show up as white spots) on the brain and spinal cord of MS patients. Not only is it used to diagnose MS, but it’s also used to monitor the progression of the disease. Regular MRIs are used to track disease progression and to determine if your treatment is working (it’s important to remember that a lack of symptoms doesn’t mean the disease is inactive). Bottom line, if you have MS, you’re going to end up getting a lot of these scans.

So what’s the problem?

It’s a routine exam that can take between 45 minutes and an hour and a half (though some are much longer). Not a huge amount of time until you realize the scan takes place in a small, coffin-like tube. That is really the crux of my issue with MRIs, the tube. I admit, I’m a big guy, so that tube feels extremely tiny. Additionally, we are often raised to the top of the tube, our face just a few inches from it. We are also inserted so our head (and much of our body) is all the way in the tube. Oh, and our head is normally restrained because any sort of movement means the test must be redone. Cough? That part of the scan must be redone. Breathe heavily? Sigh? Have an uncontrollable MS spasm? Redo that part of the scan.

Now, you may have heard about “Open MRIs”. I’m sure they are a great thing, however, the scans needed for MS can’t utilize them. We have to be deep in that coffin, I mean, tube, with our head close to the scanner. I never considered myself claustrophobic until I started getting routine MRIs. Somewhere along the way, I developed a certain amount of claustrophobia and now it has a great effect on me when I go to get this “routine” scan. I’ve now built it up in my head as this awful experience. So much so, that I’ve had nightmares about MRIs.  To me, it really does feel like being buried alive for an hour and half. Which you might say, oh, well, you know someone will dig you out in an hour and half. But still, dug up or not, it still feels like being buried alive!

Oh, and have I mentioned that it’s loud? Well, it’s loud. The sound of the magnets make the tube such a loud place that we are often given headphones or earplugs to wear. Even with those, the magnets are still loud and uneven to me. Not great for a person who has trouble with noises. The nicer places will play music for you through headphones, which is helpful, but you can still hear the sound of the machine.

Another issue with such an enclosed space? Temperature. I’ve found that my temperature experience inside these tubes can vary greatly. From frigid to extremely hot, it’s never what the rest of the building seems to be. You know who has a big problem when it comes to temperature? People with Multiple Sclerosis.

Part of life

So as you can see, I am not a huge fan of getting MRIs. They are a very necessary part of my life now, and as much as I complain about them, I realize their importance. Tracking disease progression is extremely important. Getting results that are mostly unchanged is a great feeling and can be especially important when we don’t often see a tangible result from taking our medication. I’ve got one coming up and thought I’d share some of my feelings about them because I’m sure I’m not alone. We’ve got some great tips on dealing with MRI anxiety, but I would also love to hear what you folks think about them? Any tips? Anything about them that you especially dread?

Thanks for reading – Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (52)
  • weezy
    1 year ago

    After having MS for 17 years and too many MRIs to count, I found your article very similar to how I feel and gave me a chuckle or two. Some of your tips I will be trying as my next MRI is just days away. Interestingly, I have never been offered music, though I would certainly accept it. I find that I am so nervous about messing up the scan with movement, I have actually held my arms so rigid that when I was let out, my arms ached. I also have been surprised that the addition of pillows or the wedge under my knees (only offered after the first ten or so scans) made my ability to move and walk after the scan a little better. It’s funny how since we have had to accept so much with the diagnosis and experience of MS, the MRI is just another hurdle to crawl over!

  • PetieJ
    2 years ago

    Sarcastic. Ya think?!! I was dx in1991 with MS. Many scans. This past May I saw a new neurologist who ordered an MRI bcuz the one done in the fall was done w/o contrast. For the first time in all these years, not only my brain, but cervical and thoracic spine was scanned!! Oh, a lesion in my neck somewhere! Not to mention the stenosis in my neck which got me a visit with a neurosurgeon who said, You need a fusion! I was not happy. I’ve had 4 spinal fusions. My theme song is I AM TITANIUM. However…the MRI. UGH.
    I was thrilled to know my husband could be in the room with me, pull a chair up to the Thing, and be able to hold my hand! He gets his ear plugs and settles in. (he used to work on them, CAT scans, xray equip, etc.) Years ago I went to a different place and they wanted me to put my head in this box. Then suddenly, this tech pulls a cage down over my face and Slam, locks it in place. Not cool. Get It Off NOW! I’m very claustrophobic and that just took the biscuit! I had to sit on the edge of the table for almost 20 minutes before we could try again. FIRST-washcloth over face! That way I can open my eyes on purpose or accidentally and not have something an inch away. SECOND-gently. Please. All else, pillow under knees, blanket, etc, ask for ANYthing you think may help. I should take my own advice. Having three sections done, plus contrast, took 2 long hours. By the time I was out and Free to go, I couldn’t get off the table! My back hurt so bad and was so stiff, I couldn’t move. But, believe you me, I found my fortitude & made haste to depart. Only once have I been given The Button to alert them, & I definitely could use some tunes! Capital ideas! Sedation should be a mandatory offer from Someone!!!

  • i4n30d
    2 years ago

    14 yrs with M.S. and my first M.R.I. was the worst as i thought i had a brain tumour
    The first few years i was terrified
    Now it’s just something that i have to do every year
    I will never feel fully o.k. with them
    I have the urge every time to press the panic button but i haven’t
    My latest one was two weeks ago and i dread more the nurse putting a line in for the dye

  • Devin Garlit moderator author
    2 years ago

    Thank you i4n30d! I feel like pressing that panic button a lot, especially when I’m slowly being rolled into the tube! Which again happens when they put the contrast in. Also, it’s weird being immobilized and not seeing them put the dye in, that always freaks me out a bit!

  • JMeyer
    2 years ago

    My 3rd MRI I was offered sedation. The ONLY way to go – I BARELY remember them!

  • Devin Garlit moderator author
    2 years ago

    Thank you JMeyer! That definitely must be helpful!

  • Laura73
    2 years ago

    I have made it a game when I am getting mine done all the noises mean something different in my head. Like soldiers shooting rifles too the nutcracker dancing to a certain span of noises and so on. It makes the time go by faster and I ALWAYS close my eyes. And of course your nose always gets itchy when u are in the middle of the scans.

  • Devin Garlit moderator author
    2 years ago

    Thank you Laura73, very cool. I’ve certainly used my imagination the same way while stuck in there! And I hear you about the itchy nose, happens EVERY time!

  • Jenn
    2 years ago

    My very first MRI was scheduled by my PCP when I saw him because my mom told me I have MS after reading a magazine article about Montel Williams and thinking about some problems I’d been having. He prescribed me a small number of Valium pills. I took 2 but I didn’t know why?! I had that MRI at a hospital. It was loud, of course, and kinda freaked me out being in there for so long, but it was not really a big deal. After that first one, I got a bad neuro who sent me for a couple each year for the next 2 years, but I got pregnant and that neuro didn’t treat the post baby relapse. I lost my ability to walk and got a new neuro, and started Tysabri. The MRI’s I have now are in the mobile MRI truck. My children are now 18 and 10, they’ve added headphones with music during the MRI and now that I’m not on the Ty anymore I have only one MRI a year because they haven’t changed since I started the Ty. I don’t mind it, I always tell the techs that it’s my mini vacation with no kids asking me for anything! LOL! For me, the worst parts are the damn contrast injection and having to leave my scooter on the lift and walk (stagger) to the platform. If they don’t give me the thingy to put under my knees so I’m not laying flat for a long time, my legs lock up and I can’t move for a few minutes after I’m done. So for the most part, I am fine with the MRI part of my life. It’s my 12th MS Anniversary in a couple months so I guess there will be many more MRI’s in my future! Maybe they’ll make improvements to the process! 😉

  • Devin Garlit moderator author
    2 years ago

    Thank you for sharing Jenn! It’s so interesting to here everyone’s stories and experiences with MRIs. It’s such a common thing for all of us, but I rarely have given much thought about what it’s like for everyone else! So glad people are sharing here!

  • Jenn
    2 years ago

    with almost 12 years of MRI’s now, I have no idea about this mirror that I keep seeing mentioned. I don’t see anything outside of the tube, sounds kind of cool!

  • screamingviolet
    2 years ago

    When I first started getting them I was really scared and just had to just slowly relax each part of my body and look at the mirror that lets you see out. If you have someone with you some MRI techs will let them be in the room with you once they have removed all metal on their person. I have had MRIs where they actually have a dock where you can plug in your mp3 player and can actually listen to your music while inside the machine. If that isn’t available talking to the tech helps and I also like to close my eyes to meditate to the rhythm of the MRI. I know it is weird but there are different noises for all the types of scans they do. Since they usually block your head to keep you in position I have fallen asleep before which is okay because as long as you aren’t moving your scan is good.

  • Jenn
    2 years ago

    I’ve fallen asleep in the MRI machine before, too. I don’t know how the heck it was possible to fall asleep with all that noise but you’re right, there is an almost rhythmic sound to the process and I guess staying in tune with it can knock you right out.

  • LuvMyDog
    2 years ago

    I am terribly claustrophobic and getting in an MRI is torture. I used to get at least 2 MRI’s a year but had to stop because of how it effected me. A couple of years later I was speaking with a new neurologist. One of the things she told me, she had a patient who had been dx with MS but very little showed up on the MRI. I was diagnosed with MS 35 years ago. I had so many MRI’s and yet, there were always very few changes if any. So, I don’t bother with MRI’s anymore. I recently had to have an MRI for a back injury but thankfully for that, your feet go in first and you don’t feel like you’re completely inserted into that miserable tomb.

  • Devin Garlit moderator author
    2 years ago

    Thanks for sharing LuvMyDog! Always appreciate hearing more about your experiences!

  • dawnjanisch
    2 years ago

    My techs know that I have to close my eyes before they put the mask on! Looking through that mask makes me more claustrophobic than the tube! As long as I close my eyes and keep them closed for the entire procedure, I am okay. My fight is to stay awake with my eyes closed!

  • Devin Garlit moderator author
    2 years ago

    Thanks for sharing dawnjanisch! I completely see what you mean about that mask making things even worse! I’ve felt that way at times too!

  • GlennD
    2 years ago

    I agree completely with mamak1118. If the tech does not talk to you, it makes it much worse. At age 52, I received my first MRI, and it showed my brain was lit up like a Christmas tree. I was told it was 98% that I had MS. A spinal tap 6 months later confirmed 100% that I had MS.
    It is now 10 years later. I never had a previous problem with the yearly MRI. However, lately I’ve become antsy and anxious in the tube. I do not mind the brain and neck scans, because the helmet with the mirror allows me to see the technician. I like talking with them. I ask that about each 10 minutes, that they pull me out to take a breather. They always comply. Plus, I have ample space.
    The last two years, they decided to also take the thoracic and lumbar scans. Not only does that add an agonizing hour to the process, but I have that suffocating squished sensation because the helmet and mirror come off. The technician last year was horrible. Not only did they NOT talk with me, but they disappeared for a long period of time. I began squeezing the ball to pull me out. Nothing. I started screaming to get me out. Nothing. Five more minutes went by. I started kicking my feet violently – I did not care if it ruined that part of the session. Finally, the idiot responded and pulled me out. I do not care – my thoracic and lumbar has not changed in 10 years. I will not go in a closed MRI for those two scans again!

  • Devin Garlit moderator author
    2 years ago

    Thank you for sharing GlennD. I agree also, if the tech doesn’t communicate frequently, it makes the issue much worse. The good ones will, at the very least, say something before each scan, even if it’s just saying how long the segment will be. I’m sorry to hear about your thoracic and lumbar scans, that sounds absolutely awful!

  • Amber
    2 years ago

    I always get MRI about every 6 months and I tell you it doesn’t matter what machine they put me in I’m scared to death. I haven’t got use to getting them there is no easy way you just deal with it.

  • Devin Garlit moderator author
    2 years ago

    Sorry to hear that Amber, maybe some of the tips that other commenters have mentioned might be helpful?

  • 219pauh
    2 years ago

    Devin, I was the same way, until a nurse gave me a “washcloth” . And told me to put it over my face (and not cover the nose). I positioned it over my eyes so I couldn’t look up, and if I look down, I could see light out and my feet……It worked .
    So now I take a “sleep mask”, and can still peek out at my feet and see light. As long as I can’t see up, I’m fine. Try this, and see if if works for you. Bless You.

  • Dena2015
    2 years ago

    I hate them. I get myself all worked up over them. I really have not found a way to tolerate them with ease. Its a wonder we dont stick to the fridge.. I have them every six months for my MS, and even more because I had a tumor on my pituitary gland, so yay me. Its hell to me.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much 219pauh! I don’t know why it never occurred to me to take a sleep mask or other eye cover in with me! Fantastic idea!

  • marlapw35
    2 years ago

    Thank you for posting this. I thought I was going crazy because at first having a MRI didn’t bother me, but now I find myself getting anxious and claustrophobic each time. Some of the comments below give good tips on how to get through the MRI without panicking.

  • Devin Garlit moderator author
    2 years ago

    Thank you marlapw35! I thought it sounds strange too, that I was once fine but somehow became claustrophobic! Nice to know I’m not the only one!

  • lcal
    2 years ago

    Hello all and Devin as soon as I seen the head title for this article I knew who wrote it
    (superb writer when your work is noticed from afar)

    So, I used to feel very panicked, and feel as if I was in a coffin in a dream like state in MRI’s. Then over the years something happened and I have learned to LOVE them!
    If you can use your mind to clear out the machine gun noises, knocking etc close your eyes and realize you are in the most serene place possible. There are no phones ringing, no television, no voices blurring together, nobody at the door. etc
    I go into MRI room, chat with techs a few min then tell then I am going to sleep plz DO NOT talk to me thru intercom. BEST ALONE TIME EVER!!! Its always too short
    Lisa

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Lisa! I very much love your attitude and I need to really approach it like that. I suppose it could be a very nice and peaceful time (especially if I keep my eyes closed!)

  • AZStevo
    2 years ago

    LMAO, what’s the point of all these MRI’s except for logging the info gained from them? So, you are having issues as shown by the MRI, what can they do about it and if there is something why aren’t you already doing it? Seems like a waste of money

  • Devin Garlit moderator author
    2 years ago

    Thanks AZStevo, they can certainly seem pointless. It some cases especially. However, for many, it’s a way to track how medication is working. The disease can progress even if there are no symptoms, then the symptoms show up suddenly and things are to far gone to help. Tracking the progress through MRIs can let doctors know if a treatment is being effective or not. Someone may feel fine and be taking a medication, but if their MRIs show new lesions, they know that the drug they are taking isn’t all that helpful and their wasting time and money on it. So they can seem like a waste of money, but they can help make sure all the money spent on treatment isn’t the real waste of money.

  • Shiree
    2 years ago

    I schedule my MRI’s for first thing in the morning, which helps because I’m not thinking about having to have a MRI all day long. I take Ativan, which helps me to relax. Also, when I hear the loud noises, sometimes I think of it as my lesions being chipped away from my brain and spine. Thanks for sharing Devin.

  • Devin Garlit moderator author
    2 years ago

    Thanks Shiree, I try to do the same, with all of my appointments really. The earlier (and less awake I am) the better!

  • sophiekerr
    2 years ago

    I absolutely HATE them! Have to use two Valium now and still don’t fall asleep. Music helps but I dread them every year!

  • Devin Garlit moderator author
    2 years ago

    Thanks 1ox6leb, we certainly aren’t alone!

  • Basia
    2 years ago

    I get my MRIs in an open MRI and always have. It still was a big fear of mine always to just get an MRI but then I found out I have MS and ya, MRIS are part of it. I’ve gotten used to it now with the help of a few things. But, why can I use an open MRI? I get results from the scan same as everyone else. It’s just a brain MRI and I don’t feel anything really holding my head in place but I make sure to never move. I hold that button to contact the tester and it helps. So, still afraid every time but glad I’m using an open MRI.

  • Devin Garlit moderator author
    2 years ago

    Thanks Brynn. It is odd that you can use an open MRI. Open MRIs are not as strong (the magnets) as Closed MRIs and so don’t give the level of detail that most neurologists need to see. So it’s possible to miss something with an open MRI. Your doctor may feel that he can see enough with it to treat you though.

    There are really three kinds of MRIs: Open, Closed, and Research. All have different magnet strengths, which leads to higher level of detail. There are some people who have symptoms but their MRIs show nothing, whether open or closed. Those are cases where a Research MRI (the strongest) may show something that Open and Closed do not.

  • Nancy W
    2 years ago

    I had MRIs of my neck and brain this morning. It only took about 45 minutes for both of them. I was out of ther in an hour and a half, including registering and dressing. The tube this time did seem more roomy.

    But, I woke up extremely anxious this morning because I have been getting coughing fits for the last year and was so afraid I would cough. I knew they could do that part over if I did but who wants to lie in there longer. So part way through I felt the fit coming on and somehow did not cough. When I get this fit, my mouth and right eye waters, so I lay there deep breathing with a mouthful of saliva and tears running down into my one ear. I knew it was only going to be about 5 minutes but, boy, did it seem longer til I could wipe my eye and swallow well.

    Other than that, I have some ways to pass the time.I prayed for my whole family, one at a time and for anyone else I could think of needing prayers. I could not hear the music with the ear plugs in so I sang to myself in my head. And then I made up poems about a recent camping trip,with my family. Just two rhyming lines for each thing I thought of. Like

    While the kids went to the playground,
    I listened to birds, love that sound.

    (Nothing profound)

  • Devin Garlit moderator author
    2 years ago

    Thank you Nancy! You bring up something I always worry about, coughing! That, and while I know they can easily re-do whichever part they are on if I move, I still feel bad about that. I know I shouldn’t, but I can’t help it!

  • Julie
    2 years ago

    When I was in the process of being diagnosed 17 years ago I lived in a tiny little town in Nowhere, KS. The closest town was 20 miles away and had a small hospital. Every other Saturday the mobile MRI truck would pull up in the front of the hospital. If you’ve never had an MRI in one of these mobile trucks you are really missing out on a treat. (I can be sarcastic too)

    Like you I never considered myself claustrophobic. I had gone thru lots of caves in southern Missouri and Kentucky, lots of tight places underground so when the woman asked me if I was claustrophobic I said, Nope!
    She slid me into this tube that makes a regular MRI machine look like a mansion, gave me a panic button (uh oh, why do I need one of those?) and went to the front of the truck to start the machine.

    All of a sudden I couldn’t breathe. I tried taking deep breaths and ended up gasping. I needed out of there! I forgot all about the panic button and started screaming, GET ME OUT OF HERE GET ME OUT!!!! She came and slid me out. Suddenly I could breathe again. I asked her how long I was in there, surely it was at least an hour. She said maybe 5 minutes.

    That was my first experience with an MRI machine. I refused to go into one for a long time. My doctor sent me to the open ones with a couple of happy pills and that worked for me although as I was laying there I thought “if there was an earthquake this thing would fall down and smash me” I live in Kansas, we don’t have earthquakes. This is just how my brain works. Eventually, my neurologist told me I would have to bite the bullet and get into a regular machine. I did and it wasn’t nearly as bad as I feared it would be. Been going into one a couple times a year ever since. I almost have the dings and buzzes pattern memorized. I’ve just come to realize it’s part of my life now, just do it. I use to have a dear friend in SC that told me she doesn’t mind going into one, it’s the one place her kids can’t find her. Gotta love a bit of MS humor.

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie! I’ve never been in a mobile one, but I’m sure it’s much worse! That is definitely not a good first experience (anytime you are given a panic button, it immediately feels like there is reason to worry!). Ha Ha, I love the way your friend thinks and I’m trying to be better and think of it as a nice little time when I can get away from life for a bit!

  • SarahJ
    2 years ago

    HA! I have two things I joke abut regarding MRIs. I have had 27 of to date – all related to MS. I jest that I am disappointed that I have yet to get super powers from the nasty contrast chemical that gets pumped into my veins each time. I mean – come ON! The ability to fly? See through walls? Something! And then I have suggested that they have a rewards program…a points system of some kind like at various retail establishments. Reach 500 points and get a t shirt! Reach 100,000 get your name emblazoned on the side of the tube.

  • Jenn
    2 years ago

    I’m with you! I’ve had 22 and a points system would be great! LOL!

  • Devin Garlit moderator author
    2 years ago

    Thanks SarahJ! LOL, I wish there was a point systems, I’m pretty sure I’d at least have a t-shirt by now! Also, I now wish I kept count of how many I’ve had (though I’m sure I could find out if I wanted to!)

  • stubor
    2 years ago

    Oh, I just had a repeat MRI a couple of days ago. This was in a truck-mounted portable machine. It was so tight fitting, I was squashed against the sides and my arms promptly went to sleep. Plus. a hockey-like face mask that is flush with your face is required. If I have to use that machine again, I am taking Valium or thorazine beforehand.

  • Devin Garlit moderator author
    2 years ago

    Thanks stubor! Those truck mounted MRIs sounds extra tiny! I’m glad I haven’t had one of those….yet!

  • Intimid18
    2 years ago

    I discovered my claustrophobia at the MRI tube. I found a blindfold or a washcloth over my eyes before they roll me in helps greatly. Since I can’t see that I’m right up against that tube, it helps mitigate my panic. I hope that can help you on your trip to the “Tube”.

  • Devin Garlit moderator author
    2 years ago

    Thank you Intimid18! I try my best to keep my eyes closed too! Sometimes I can’t help but sneaking a peak though!

  • Yoshitail9
    2 years ago

    Devin
    PS.. forgot my big fear is being in the tube and having to pee. Having been diagnosed in 1979 and now being 70 years old ,the combo makes for things down there not working like they used to !

  • lcal
    2 years ago

    Yoshitail9 I must say I never thought off the having to “pee” thing during an MRI before but believe me, when I get mine in a couple of weeks and start randomly cracking up laughing as soon as test starts, I hope when they stop the test to ask if I’m ok I will not lmbo more because then I may “pee” my pants
    thank you for the laugh but I in no way am making fun as I have had bladder/kidney surgery and issues for years

    Lisa

  • Devin Garlit moderator author
    2 years ago

    Thanks Yoshitail9! Oh yea, having to use the bathroom while in there is always a concern for me! Absolutely a big reason why it’s such a difficult time!

  • Yoshitail9
    2 years ago

    Hi Devin
    What I usually do is once I’m in the tube I open my eyes and then close them quickly. They stay shut and I either count to the beat of the banging, think about baseball or say the Holy Rosary. Works for me

  • mamak1118
    2 years ago

    The worst thing for me is when you get a tech who doesn’t talk to you. It’s one thing when you know how long each test is going to be, or how many more minutes you have. But when you get dead silence on the other end, it’s torture!

    My go-to is listening to music and assuming each song is approximately 3 minutes long. If your test is 20 minutes, it feels better thinking you have 6 or 7 songs to listen to. It goes by faster for me if I break it down that way.

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