An Uncomfortable Hug

The MS hug is a symptom many individuals with multiple sclerosis are all too familiar with. It’s a hug that is not only uncomfortable but also undesired. The MS hug can be described as chest pain, rib pain, or a band of tightness around the chest and/or torso. It can be felt anywhere between the neck and the waist, and might occasionally feel so tight, that the individual experiencing it has pain or difficulty breathing. For many, it can be excruciating, frightening, and resilient. Recently, Continue reading

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Bring it On

By Doug Ankerman

As a MSer, I’m not one for change. Change brings uncertainty, anxiety and undue stress that my tattered nerves don’t need. But this change in season, I welcome.

Welcome the Change in SeasonI LOVE fall. And so does my multiple sclerosis. Cooler temps. Tolerable humidity. And stable barometric pressure that isn’t Continue reading

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Everyone Has a Unique Diagnosis Story

Everyone living with MS has been diagnosed at different stages in their lives and each has a unique story and experience. We wanted to know more from our community members, so we asked a simple question: “At what age were you diagnosed with MS?” Not only did several hundred community members respond, but we heard bits and pieces of so many different diagnosis stories. Here’s what some of our community members told us.

Diagnosis at any age

Many of our members reported completely varying ages of diagnosis, including the following responses:

“At 24 I was diagnosed… now it’s 10 years and 4 kids later.”

“I was 29 years old, started with numbness & tingling in left foot… within a couple of days both legs were numb & tingling.  After a month & a bunch of tests I was told it was MS.”

“They told me in my 20’s it might be MS, I didn’t get a diagnosis until I was 50.”

“I was diagnosed at 43 in Jan 2014.”

“For me it was two years ago at the age of 55 years old.”

“I was diagnosed at the age of 60 in 2015.

“I was 41, but had symptoms a few years prior.”

“The official diagnosis came when I was 21

“I was diagnosed at 52 years old.”

There is not often a direct path to diagnosis

Many of our community members have found that confirming their MS diagnosis was not a simple nor a fast process. A large portion of our community members experienced symptoms for months, years, or even decades before getting an actual diagnosis.

“I was 23, but I had undiagnosed left sided weakness and heat intolerance since about 14

“For me it was at the age of 29, but I started showing symptoms since the age of 15. I was hospitalized for weeks because of numbness on my left side from head to toe. They ran the gamut of tests they had back then and had no idea…

“I was 38 but took 8 years to get the diagnosis!

“I was diagnosed at 43 years old, but I had been experiencing symptoms for at least 15 years. It almost came as a relief, because at least now I knew.”

“Diagnosed at 54, with weird symptoms for over 2 decades.”

“Symptoms at 26, diagnosed at 52.

“Probable diagnosis at 28 … definite at 33”

“My first symptoms at 45, final diagnosis at 48, after misdiagnosing and treating sinus area pain”

Incorrect diagnoses

Diagnosing MS can be a challenging process; early symptoms can often be suggestive of several other conditions. Not only did many of of our community members report having a long journey to diagnosis, but also, having stops along the way where they were misdiagnosed, or treated for something different.

“Diagnosed at 56….it took many years as it’s a disease that masks others…they thought it was Lupus for many years”

“I was 34 but misdiagnosed for 10 years”

“I was 33 years old, but was misdiagnose with Epstein-Barr for seven years”

“I was 29 but I had been misdiagnosed with hemiplegic migraines for year before”

 “At 31… Was told it was a brain tumor…

“I was diagnosed at 19 but had symptoms my whole life doctors thought I had a stroke or diabetes or just bad migraines”

Regardless of age, the road to diagnosis may not be a direct or simple one. An MS diagnosis can come at any time in life, and can change everything.  Whether you’re diagnosed at 15, 55, or 95, we’re here for you! We hope you’ll continue to share your diagnosis experiences with the MultipleSclerosis.net community.

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That Ringing in My Ears….

We recently asked our MS community about tinnitus, also known as “ringing in the ears”. Although ear-related issues are less common than other MS symptoms, many of described how the sounds of tinnitus impact their lives. Our community members pointed out several triggers for tinnitus symptoms, including stress, fatigue, loud noises, sickness, and sudden noises. If you experience tinnitus, there are ways to manage this often-treatable symptom, and know that you are not the only person with that annoying ringing in your ears!

Here are several ways that tinnitus has been described:

“I have at least 3 or more sounds at the same time”

“Mine is a high-pitched ringing like a security system in a mall”

“Sounds like a pulse, throbbing noise!”

“Loud hissing & screeching”

Buzzing, squealing, ringing, hissing, and screeching. Although many people describe their tinnitus as a high-pitched whine, tinnitus affects different people in different ways. For some of our community members, a pulsing, throbbing sound is common (this is known as pulsatile tinnitus), while others experience crickets chirping, buzzing, and screeching. Tinnitus also occurs at different volumes and intensities. While some people report a mild ‘background noise’, others explain how tinnitus sounds are so loud that their hearing is affected. Recently, experts have linked hearing and other auditory problems to nerve damage from MS, so if you experience hearing changes, you may want to talk to a doctor.

Our community members also noted:

“It makes me feel like I’m gonna go crazy”

“Noise noise noise! Affects your sanity!”

Regardless of what your tinnitus sounds like, recurring noise, especially coming from inside your body, can be annoying. When describing tinnitus, many of you shared how these internal noises make you feel ‘crazy’, ‘frustrated’, or ‘irritated’. Just like a baby screaming or fire alarm blaring, the symptoms of tinnitus can be difficult to ignore. Although many of our community members shared how tinnitus can be stressful, many of you also talked about ways to manage or drown out the tinnitus sounds…

“I use a sound machine at night and keep my fans on”

“I always put the TV or radio on for background noise”

“A little ‘white noise’ helps”

“Get cleared by an ENT first, rule out any other issues, then try some vestibular exercises”

“My neurologist sent me to an otolaryngologist who was well versed in MS. She gave me good advice”

Especially for individuals affected by MS, it’s important to get enough sleep. Our community members shared a variety of sleep-related strategies for tinnitus, including background noise (such as a fan, TV, or radio), a white noise machine, or even going to an ENT or other medical provider for treatment. For many people, tinnitus symptoms can be treated by getting the ears flushed by a doctor, changing medications, or sometimes chiropractic adjustments. Although tinnitus symptoms can be frustrating, consider trying one of these strategies to manage your symptoms, and reach out to your MS community for other ways to feel better!

“My neurologist told me that MS rarely affects the hearing”

“My neuro doesn’t believe that tinnitus is a symptom of MS”

“I think [my tinnitus is] MS related, regardless of what my neurologist says”

When describing their tinnitus symptoms, many community members shared stories of doctors and neurologists saying, “That’s not related to MS”. Although hearing impairment is a less common symptom of MS, more recent evidence shows that MS can definitely impact your ears, including tinnitus, sensitivity to noise, difficulty hearing, problems with language/auditory comprehension, and vertigo. Overall, MS symptoms are different from person to person, and many of you have doctors who agree that MS can cause tinnitus. However, even if your doctor has doubts about the association between MS and hearing-related symptoms, know that you are not alone, and consider talking to an auditory specialist or ENT who focuses on MS patients.

“Thanks for mentioning this little-known symptom”

“I have had ringing in my ears for a long time”

“Not *that* rare!”

“I’m surprised it’s rare. I’ve had it ever since my first attack in ’69”

“Wondered about this for sooooo many years”

Although medical experts often consider tinnitus a “rare symptom of MS”, for many of you, there is nothing ‘rare’ about it! When we first posted about tinnitus, many were surprised to hear that other people with MS has this symptom. As we learn more about MS together, we hope you will continue to share your experiences about the lesser known impacts of this condition, and hope you can find ways to manage your symptoms that work best for you!

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Cognitive Changes

This month we’ve been talking about MS symptoms that aren’t spoken about or mentioned as often as other symptoms within the MS community. Some of the symptoms highlighted so far have been issues with incontinence and bowel and bladder challenges. On the My MSAA Community peer-to-peer forum, we recently asked a poll question about which commonly overlooked MS symptoms individuals would like to learn more about, and one of the results has been cognition. Though many individuals are experiencing this issue, it’s still not one discussed very often, and it’s hard not to wonder why.

With the multitude of research that has been – and continues to be – done on MS, issues with cognition are still questioned and sometimes aren’t even associated with the disease itself. Individuals often ask if MS can affect their cognition and thinking when they notice certain changes, and the answer is unfortunately yes – this, too, is another area that MS can influence. If parts of the brain that control judgement, memory, thinking, and reason are affected by MS disease activity and inflammation, then symptoms can manifest and cognitive changes can occur. Sometimes individuals do not know that cognitive changes can be a symptom of MS and they ask if there is something else going on, or is it due to getting older/the aging process itself, or stress, etc. Bringing this and other types of symptoms that aren’t discussed as frequently to the forefront will help increase awareness of them being related to MS, and in turn, start conversations on how to address them.

There are several types of feelings that can be provoked by cognition changes due to MS, and embarrassment is a feeling that oftentimes accompanies this symptom. Individuals can feel self-conscious and uncomfortable if they’re experiencing issues with their memory and thinking—especially when interacting with others or trying to fulfill work or relationship roles. Shame and guilt can be other feelings associated with cognitive difficulties too. People feel they should still be able to do certain things and not have to ask for help or admit they can’t do what they once did. It’s very common for these types of feelings to emerge when it comes to such an impactful symptom that can effect day to day situations so easily. But knowing that you don’t have to feel ashamed or guilty if it does occur is key – and so is knowing that you can talk about it with others who are supportive and can identify with you, as you are not alone in this symptom issue.

MS sets out to be a thief not only of physical body functions, but also of mind operation as well, and it’s to no fault of those affected. It’s important to recognize if you are experiencing cognitive changes or challenges, and to bring it to a healthcare professional’s attention so you can work together to try and address it. MS may have its own agenda, but you can show your power with proactive steps in symptom management and self-care and awareness.

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What do you want people to know about MS?

Living with a chronic condition like MS can be very difficult and frustrating.  Explaining to others what it’s like to endure life with MS can be even more frustrating.  Our community members have shared with us what they wish others knew and understood about MS.

Of the many symptoms that trouble those with MS, one of the most common that is misunderstood is fatigue.  MS-related fatigue is hard to understand, yet it is so important for family, friends and caregivers to comprehend.  All of us have experienced fatigue at one point or another, but MS-related fatigue is like no other.  MS fatigue is significantly different than fatigue experienced by those without MS and it is important to recognize the differences.

“MS related fatigue is not the same as being tired.”
“MS fatigue is not caused by losing out on sleep.”
“MS is exhausting and can cause extreme fatigue and horrific pain.”

MS fatigue is present no matter what. The simplest of tasks become incredibly difficult, and it takes so much energy to do things that others take for granted.

“Simple tasks like taking a drink or going to the bathroom are unbelievable difficult.”
“No amount of sleep or rest will help my fatigue.”
“It’s not like you are too exhausted to do something, it’s that you are too exhausted to do anything.”
“I’m not lazy, I just hurt and need to rest.”

Although fatigue is one of those invisible symptoms, it can significantly interfere with a person’s ability to function at home and work.  Our community members dealing with MS want others to know that fatigue is a real issue and it affects their daily life immensely.  MS-related fatigue can cause cognitive impairment, clumsiness, and poor balance.

“Fatigue is something I encounter at some point every day of my life.”
“My fatigue occurs on a daily basis.”
“Fatigue can come on suddenly, which means I have to cancel plans on short notice.”
“My fatigue comes on easily and suddenly and can worsen as the day progresses.”

Our community members shared with us that along with their fatigue, comes stress, anxiety and depression. The frustration can bring on anger and impatience.  It is so important for family and friends to understand where this is coming from.

“Pain makes tolerance hard.”
“I get so frustrated with myself and I get angry with others.”
“I have less patience for people and things.”
“I never used to be short on patience, but in recent years, my fuse has gotten very short.”
“At times, my anger can rise more quickly and there are fewer filters.”
“I snap at everyone but don’t mean to.”

Our community members also wanted others to know the true “invisibility” of MS.

“I may look fine on the outside, but I feel terrible on the inside.”
“MS makes you appear normal on the outside, but wreaks havoc on the inside.”
“Others can’t necessarily see our limits, as we see and feel them.”

It is also important for our family, friends and caregivers to know that MS is a constant battle.

“It’s on my mind always, even when I feel well.”
“MS is something you think about every day.”
“It’s unbelievably hard to live with-mentally, physically and emotionally.”
“This is not something I chose.”

Finally, our MS community members wanted others know that life is not easy and every day can be a different challenge!

“It’s a roller coaster…you have ups and you have downs, twists and turns, except it’s never fun.”
“No two people progress the same.”
“It can knock you off your feet at any time.”

One common theme that came up frequently from our community, and stands on it’s own as a constant reminder:

“It’s out of my control.”

 Educating the people in your life, though often challenging, can help you receive the empathy and understanding you so deserve.

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MS, Do you mind?

When talking about MS symptoms, many know how different and varied these can be with the disease – from the different types that can occur to their various degrees of severity, what affects one person can be very different to another. The symptoms that MS causes can not only have impact on the person experiencing them, but on those around them as well. Certain symptoms can impact relationships and unfortunately, once again, MS acts as if it has complete control over all facets of one’s life, but this is not the case. Not when individuals can do things and make choices to manage these symptoms and work hard to combat them as much as possible. It’s not easy or always a possibility, but MS has to know that it’s getting a fight from the other side and the disease is not always going to be victorious.

One of the MS symptoms that can have direct impact on relationships is issues with sexual dysfunction. This is usually a less talked about symptom and one that many shy away from discussing or disclosing. But it is one that deserves attention and awareness, because many can experience it and it’s important to know they’re not alone in this. It’s bad enough that MS causes symptoms that can impact daily routines, schedule, work habits and other factors, but really—does it also have to come between individuals sexually, in their most private moments and encounters? Come on MS, do you mind?

For those who have experienced these symptoms, one key element to battling MS in this scenario is communication. Again, we know this can be uncomfortable to disclose and openly talk about, but if these symptom issues go unaddressed, the persons involved in the relationship may not know or understand what’s going on, and if not given a chance to learn or be aware of it, it’s hard to move forward and manage with it together. Talking about it with a doctor or counselor can help to create a safe atmosphere to openly discuss what’s going on and brainstorm strategies and ways to help manage it. There can be other ways to help improve intimacy and interaction between each other, but it starts with recognizing the issues that are at play and what’s influencing them, because different factors in MS can attribute to these sexual dysfunction symptoms.

Again, MS may think it dictates everything that occurs in one’s everyday life, but there are some things that it really has no business being a part of…

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What Webster Doesn’t Tell You About MS

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Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.

Here are some of the odd, unexpected symptoms our MS community experiences:

“It itches, it burns, it’s even numb!”

  • Itching
    • The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
    • My hands itch all the time. I always thought I just had dry skin!
    • I get itchy skin all over my face and even my eye lids!
  • Burning
    • My tongue has felt burnt since I was diagnosed a little over 2 years ago. 
    • The burning has been so bad
    • It literally feels like I’m burning. I get so hot and sweat just pours off me!
  • Numbness
    • I can never tell if I’m cold or hot!
    • Sometimes the left side of my face just decides to go numb.
    • I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both 

“It’s like my body forgets how to…”

  • Swallow…
    • Nothing like having to explain that my body “forgot” how to swallow
    • I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
    • I regularly choke on my own spit.
    • Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
  • Talk…
    • Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
    • The cadence of my speech has definitely altered over the last 2 years.
    • My voice has been shot for years and I can’t seem to pronounce basic words anymore
  • Breathe…
    • Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
    • I definitely experience the breathing and swallowing issue, that is so painful and scary
  • Write…
    • Itching is one of my worst also my handwriting has gotten so bad.
    • Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
  • Think…
  • The only way I can describe it is like a short-circuit feeling in your head.
  • My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
  • It’s like pregnancy brain…but ALL THE TIME

How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!

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You’re Hot and You’re Cold

There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.

See what they had to say and which faction you below to:

Baby It’s Cold Outside

  • Everything is sensitive
    • Even a slight chill causes bone-shattering pain for me
    • Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
    • My skin feels like it’s covered in needles
  • Can’t control the spasms
    • Cold causes major muscle spasms in my feet, legs and back!
    • My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
    • Cold makes me spasm more
  • My muscles are stiff and painful
    • Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
    • The cold kills my hips
    • My cold body feels stiff and won’t move
    • My legs are in constant pain in the winter

It’s Getting Hot in Here

  • Humidity is my kryptonite
    • Humidity is like wearing cement boots
    • When you add humidity to heat, I’m a dishrag – just done for the day
    • Humidity is intolerable – like having an anchor tied around my waiste
  • Heat sucks the energy right out of me
    • It’s a struggle to walk; I feel weak like I’m melting.
    • It makes each foot feel like 200 pounds
    • I have such a hard time walking; I call it drunk legs
    • I wilt like a weed in the Sahara!
    • Heat makes my muscles like wet noodles
  • I can’t think straight
    • Heat shuts me down
    • Heat causes my brain to just go flat, like I’m in a steam fog
    • My brain just doesn’t work in the heat

Stuck in the Middle with You

  • Any extreme temperature is awful
    • Extreme temperatures, either way, affect me very badly
    • Heat makes me feel rubbery and the cold makes me walk like Frankenstein
    • I hate extremes of both – heat makes me fatigued, cold makes me numb
  • I thought I hated one, now I hate the other
    • I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
    • It used to be just heat but last year the cold was very hard too
    • My MS hates the heat, but I hate the cold.

The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!

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Describing MS and its symptoms – Community Feedback

Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at MultipleSclerosis.net, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

  • The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.
  • They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”
  • When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”
  • It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.
  • I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.
  • I say I am doing unreasonably well.

It’s really difficult to get people to understand

  • It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.
  • I don’t bother “describing MS & its symptoms” anymore.
  • I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!
  • If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.
  • My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.
  • I don’t bother “describing MS & its symptoms” anymore.
  • When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”
  • ‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.
  • Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.
  • ‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.
  • I choose to not tell people that I’m sick.
  • I actually I have been accused of trying to be manipulative. It’s terrible.
  • There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.
  • This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?

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