When the MRI Stays the Same but Symptoms Get Worse

Posted on October 24, 2022 by MultipleSclerosis.net

One of the hardest parts of living with multiple sclerosis (MS) is feeling like doctors do not fully understand or appreciate the extent of your symptoms. This is especially true if they consider only your MRI results. Sadly, this experience is common. Many people living with MS have worsening symptoms even when their MRI results stay the same.

To find out more, we reached out on the MultipleSclerosis.net Facebook page. We asked community members, “Have you ever had an MRI checkup that showed no noticeable changes, however you felt as if your MS was worsening?”

Nearly 400 community members responded! Here is what they shared.

Continue reading →

Community Views: An Accurate MS Commercial

Posted on January 31, 2022 by MultipleSclerosis.net

Are they for real?! Most multiple sclerosis (MS) commercials feel completely disconnected from your experiences of living with the condition.

We wondered how you would improve them, so we turned to MultipleSclerosis.net and asked community members to get creative! We asked our community to fill in the blank: “If you directed a commercial about MS, it would include ___.”

With more than 300 comments, they had some great ideas!

Continue reading →

Community Views: Sleeping Through an MRI

Posted on October 27, 2021 by MultipleSclerosis.net

Living with multiple sclerosis (MS) means you are all too familiar with magnetic resonance imaging (MRI) tests. Some people dread getting an MRI, while others are not fazed by the procedure.

With more than 1,500 responses to the MultipleSclerosis.net Facebook prompt, “Do you ever fall asleep when getting your MRI?” there were folks in each camp! There were straight “yes” or “no” answers, while many of you shared why or how you could or could not sleep through an MRI.

Here we share some of your insightful comments!

Dealing with the noise

One thing about MRI machines is they are loud. Whirring, grinding, banging – there are many words to describe the sound. Some of you find the noise soothing. You go to sleep with the MRI functioning as white noise. Others find the noise too loud to tune out. It is jarring and keeps you awake throughout the entire procedure.

“Oh, yes. After 11 years’ worth of MRIs, the noise isn’t noise anymore.”
“I do. It’s like listening to the dryer.”
“Never! It’s too loud.”
“How can you? It sounds like you are in a plane cargo space.”

You fall fast asleep

For those of you who sleep, you sleep hard! A few community members said updates from the tech wake you. Some of you said that the tech has to intentionally wake you since your sleep rhythm disturbs the imaging.

“I’ve had the tech tell me to quit snoring because it blurs the image.”
“They end up having to redo part of it because I move when I am asleep.”
“I purposely sit up all night before my scheduled MRI so that I’ll be exhausted by the time I get there.”

MRIs serve as me time

Several of you mentioned enjoying MRIs as the time is all about you. Nothing is allowed in the room with you, which means the time is entirely your own.

“It relaxes me so much. That hour in time, no one to bug me, no phone ringing, it’s just me in the magnetic tube.”
“I have an MRI coming up, and as a mother of 2 kids, I’m excited about it!”
“It’s the best 45+ minutes of alone time in my busy, hectic life.”
“I LOVE my MRIs. It’s the only time I am completely unavailable to do anyone else’s crap.”

You need medicines to get you through

The MRI tube is very narrow. For those who are claustrophobic, MRIs can be challenging. Many community members shared that they need a drug to help relax during the procedure. You mentioned several drugs that help you get through the process.

“The Xanax helps.”
“Never! I’m too claustrophobic. I have to take Valium.”
“Only because I took a muscle relaxer before my MRI.”
“Due to extreme claustrophobia, I’m always under general anesthesia, so kind of yes.”
“I don’t, but I take 10 mg of Diazepam, so I’m relaxed.”

They lead to back pain

MRIs typically require you to lay still on your back for a long time. Several of you mentioned struggling with the process. The MRI is uncomfortable, and being on your back is painful.

“I might be able to sleep if lying on my back didn’t cause my leg to spasm and cause serious pain.”
“No, because it hurts too much to lay on my back. I can’t even sleep on my back, so I dread MRIs.”

Meditation helps calm your nerves

Many also shared using meditation as a calming technique. For some, that leads to sleep! For others, it keeps you focused and calm through the MRI.

“I meditate and pass right out.”
“I’ve learned to meditate first, then doze off.”
“No, I use it as meditation time.”

We appreciate all the ways you engaged with this prompt! MRIs are part of life with multiple sclerosis (MS). Sharing how you handle the process helps everyone feel less alone.

Staying Cool in the Summer

Posted on June 29, 2018 by MultipleSclerosis.net

For most people living with MS, summer does not bring feelings of excitement and joy. Rather, it’s a time of strategizing, planning and being careful to avoid the heat, which tends to worsen symptoms.

To start a conversation, we at MultipleSclerosis.net asked our Facebook page for tips and tricks to avoid summer’s worst. More than 500 community members reacted to the post, and 34 offered their strategies for staying cool and comfortable all summer long. Here’s what they had to say! Continue reading →

Loneliness, Being Alone, and MS

Posted on February 27, 2017 by MultipleSclerosis.net

One of the MultipleSclerosis.net contributors, Cathy Chester, recently published an article about MS and the feelings of loneliness—and how they are different from just feeling alone. Cathy’s words really resonated with our community members, and we received a lot of amazing feedback about how other people deal with feelings of loneliness and MS. Here’s what they had to say:

Enlisting the Support of Animal Companions

“My constant companions, my dogs, the best friends you could have. I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades”

“I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, and I think they will be able to benefit me. Hopefully, this will add to curing my loneliness”

“I work, read, watch TV and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have”

“The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him”

“I don’t mind being alone at home, in my own space with my cat”

So many of you talked about leaning on a furry companion when you’re feeling down. Pets can provide many benefits when living with a chronic condition, so long as you consider the means required to take on a full-time furry friend!

Finding Hobbies that Soothe the Soul

“I keep my mind occupied with my hobbies. I love TV and movies. I love reading for hours and hours at a time”

“I can still see enough to read my kindle, I have TV, and although not a fan of daytime TV, I have lots of DVDs. It could be worse, I know. So you just keep plugging along as best as possible”

“I can relate, some days are rough, but I try to sew a little every morning, which was something I enjoyed when I was young”

“Playing games on my tablet keeps my mind occupied most of the time”

While not all of our favorite hobbies are possible all of the time, many of you reported finding new hobbies or amending old ones to fit your new lifestyle. TV, puzzles, sewing, low-impact exercises like yoga or stretching, or even just watching funny YouTube videos can provide a distraction and pick-me-up when you need it the most.

Adjusting Your Outlook

“I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year”

“I do what my body allows me. I used to be very active, now I take my happiness from what I can do. I have a lot of naps now. I don’t stress over things, it’s no good for me”

“I still try to push myself to do everything I can as often as I can. I have found that a lot of times when I sit and plan out every step involved in going out, which we have to do within reason, I can become overwhelmed and staying home seems safer. However, if I take proper precautions and don’t overthink it, most of the time I end up feeling so much better that I went. It takes a lot of effort, but usually pays off”

While we can often feel like MS is an insurmountable journey, there are many of you who have shared small mental shifts that have led you to positive outcomes. A full mindset revolution may not always be possible, or even beneficial all the time, but sometimes, slowly embracing change, even when everything seems bleak, could be a step in a new, and positive, direction.

No matter how you combat your loneliness, just remember, you are not alone. Our community is always here for suggestions, or even just an ear to listen when you need. Please continue to share your experiences with MS-related loneliness with us, we love hearing from you!

MS and Loneliness

Posted on July 29, 2016 by MultipleSclerosis.net

“If you see me out or even in pictures, there’s usually a great big smile on my face. To say that I suffer from loneliness doesn’t seem to make sense. There are so many times though, where I sit and think to myself that I’m alone, that no one really understands me.”

This was just one of the many powerful quotations our contributor, Devin, recently wrote in his article The Loneliness of MS.

Even if well-meaning people say they understand how multiple sclerosis is impacting your life, it’s unlikely they do. And after reading this article, our community shared an outpouring of comments expressing their similar experiences.

Below are some of the thoughts our community shared:

I can’t get out and do things with others.

“The part I find most difficult isn’t actually being alone but the lonely feeling you get because you can’t do the things you once did with family and friends.”
“Fatigue alienates me more from friends than my obvious disability. Once you say no once or twice, invitations stop coming.”
“I feel especially lonely talking about events. I have an event in November. My thoughts are consumed with if I’ll be up to it.”
“Lost a lot of friends because of MS related issues, and I cannot go out and see those I do have often because of MS issues”
“My friends are into a lot of summer events, but there are so many unknowns…I don’t know how hot and sunny it will be, I don’t know if there will be enough chairs for everyone…will there be easily accessible toilets…I really don’t want to ruin anyone’s day. So better stay home.”

I feel different from everyone—sometimes even those with MS!

“People just don’t get it. I don’t feel ‘normal’ and it can get really lonely.
“A friend introduced me to a friend of hers who was dx 20 years ago, so she can give me advice when I had just been diagnosed. I realized how we were not at all in the same place. It was nice to know she was out there, but I still felt alone in my experience.”
“I suppose that’s why support groups are usually divided in at least 2 separate groups: DX less than 2 years ago, and all the others. I think either group could really overwhelm, and possibly upset, the other group.”
“I feel very lonely. Even though I am not physically alone, I am still alone.”
“My family tries so hard, but every time they accommodate me, I just feel different, and I feel alone.”

It’s not all loneliness, though: some of you offered solutions for easing those feelings:

“I have made the choice to look at my MS disability changes in my life that everyone I know is going to face the same challenges as we all age, I am just ahead of the curve.”
“Having a dog does help some. For me any way.”
“Online communities make a huge difference. It’s not a perfect solution, but I often feel closer to my online friends than my other friends”

While it does not fix this impactful issue, many in our community took solace in the fact that they were not alone in feeling alone. Sharing your feelings and experiences with others online can be helpful. How about you?

The Invisibility of MS

Posted on June 29, 2016 by MultipleSclerosis.net

Living with MS can be a daily challenge, even if other people can’t physically see the struggle. The invisibility of MS symptoms can be one of the hardest and most frustrating aspects of living with this condition, so when we shared some of the data about this subject from our most recent MS in America survey, many members of our MS community told us about their thoughts and experiences. Here is what they had to say:

The top issue faced, especially now that it’s summer? Trouble with the heat and the way it impacts your body:

My activity is restricted by the heat. Especially today when the temperature will be in the 90’s.
I would rate the intolerance to humidity at the top.
My speech gets slurry and my balance is off. I get accused of being drunk.
The heat makes my head swim and consequently, my balance gets really bad.
I have been feeling more and more fatigue due to my body temperature going from freezing to hot. Each time that occurs, I have less energy, less motivation to do something.
Summers are the hardest for me!!! The last two weeks have been increased fatigue, less energy, pain, and brain fog! Most people love summer! I used to, but now it’s the time I struggle the most.
Severe fatigue & the heat in Alabama are really bothering me!

Fatigue: it’s a huge (and invisible) concern for many:

Fatigue especially. It’s like the first trimester [of pregnancy] fatigue times 100!
I have fatigue every single day. It’s hard for my husband to understand that it’s every day. I have maybe 5 times a year that I feel like a normal person.
Yep, and the lack of sleep because of spasms equals more fatigue.
It’s hard for others to understand how you can be so tired doing everyday things. After doing a load of laundry, going grocery shopping and making dinner I am exhausted!

And some other symptoms that can’t be seen but definitely make life more challenging:

Don’t forget the bladder and bowel problems.
It’s the periodic blindness that sucks for me.
And the headaches are brutal.
Mood swings are really challenging..
The tingling symptoms scare me. I’ve had a couple of really bad relapses and I’m always afraid I won’t feel my body again.
Pain needs to be one for me – it’s about 99%.
My issues seem to be centered around fatigue, weakness, blurry vision and weird cognitive stuff like memory issues or not being able to think of words, or using the wrong word.
My wife, family and friends will never truly understand what it is like to have headaches and other symptoms on a frequent occurrence and why and how it affects my mood, energy levels and potential plans in a day.

Do these responses ring true for you? What invisible symptoms do you struggle with?

What You Wish They Knew About Your MS

Posted on May 27, 2016 by MultipleSclerosis.net

Many people have heard the words “multiple sclerosis” before, and probably know it’s a chronic condition, but so many do not know what it really means to have MS. We asked our community at MultipleSclerosis.net “What’s one thing you wish more people understood about MS” and the responses were phenomenal. Below you’ll read real experiences from people just like you that start to paint a picture of what MS is really like. These are the things people should be aware of; this is how we spread true MS awareness!

I’m Not Drunk!

My memory is not always good! My husband and children understand and are patient, but people who don’t know look at you like you are drunk or high
She’s not drunk. She doesn’t even drink. It’s the MS that makes her off balance sometimes
I am not drunk, I am not dumb, I am not lazy – I have MS
Don’t tell me I seem drunk when I trip – It’s not funny

I Miss My Active Lifestyle, Too

If only others understood how we miss our active life before MS. It’s bad enough that we often feel like a burden, being treated as one is pretty much the worst feeling
Sometimes I feel depressed not being able to do what I used to be able to do – others just don’t get it
People always knew me as being active, and now they never see me. I just wish they would come by sometimes. All I need is to know someone out there cares

When I Say I’m Tired, I’m Tired

When I say that I have to go home early because I am tired, I am really tired. It´s not because I am lazy, it´s not because I am bored or boring, it’s because I am tired!!
When I say I’m tired, I’m not being lazy. And when I say my body hurts, Aspirin will not help
I wish they understood that my tired is not like their tired, and my pain is not like their pain
Just because I look healthy does not mean I am and when I say I am tired and need to sit down, it’s not a joke!

Every Day, Every Minute, Is Different

I wish they understood that every moment is different. I can be good one minute and not the next
I wish people understood that my mind and body change every moment of every day
One minute I could be fine, but then next I’m not. I put on a brave face, but don’t assume I’m “fine”
Don’t ask me how I am if you don’t really want to know

How about you? Do you ever feel misunderstood? What do you wish more people understood about life with MS? Share this article and your own stories and experiences to spread the word about what it really means to live with multiple sclerosis!

MS Mood Swings

Posted on April 27, 2016 by MultipleSclerosis.net

You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!” Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

I always thought it was just who I am. An emotional roller coaster with frequent break downs.
The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

MSAA and MultipleSclerosis.net Partner for a Live AMA

Posted on March 29, 2016 by MSAA

MSAA recently partnered with MultipleSclerosis.net to co-host a live Facebook “Ask Me Anything”. For one fast-paced hour on March 22nd, everyone from the multiple sclerosis community was invited to ask questions about living with MS and have their questions answered by MSAA Client Services Specialists and MultipleSclerosis.net staff and patient advocates.

Read more about this AMA and find out what topics were discussed at MultipleSclerosis.net.

AMA March 22 2016

A special thanks to our friends at MultipleSclerosis.net for allowing MSAA to be a part of this special MS Awareness Month event and for helping improve lives today for the entire MS community!

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