That Ringing in My Ears….

Posted on June 30, 2017 by MultipleSclerosis.net

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!

Ask the Expert – Cognition

Posted on June 28, 2017 by MSAA

Featuring Randall T. Schapiro, M.D., FAAN
President, The Schapiro MS Advisory Group
Clinical Professor of Neurology (Retired), University of Minnesota

Question: What are some ways to address and treat MS-related cognitive issues?

Answer: Cognitive issues in multiple sclerosis were basically unheard of before 1983. That was not because they did not exist but because they were not studied. Subsequently they have been studied extensively and problems with memory, planning, foresight and judgement are clearly present in over sixty percent of those with MS. It is important to emphasize that everyone with MS is different and all do NOT have cognitive issues. When evaluating cognition in MS it is extremely important to take into consideration any additional issues of fatigue, depression, and anxiety. These may falsely lead to a cognitive impairment diagnosis and certainly can contribute to making cognitive impairment appear worse. There are neuropsychological tests that can objectify cognitive function and are clearly superior to more subjective testing done at the “bedside” or in the office. Investigators have tried to correlate MRI anatomy with cognitive function with varying degrees of success. At the present it is very hard to predict cognition by looking at an MRI although clinicians often try to do so. In my opinion, the best way to manage cognitive problems is to avoid them entirely by prevention with disease modifying medication. That is one of the reasons we recommend early treatment with these effective medications. Cognitive rehabilitation through a speech pathologist or neuropsychologist can, at times, be helpful but may be less that satisfying. Like many symptoms of MS an answer to disability is mobility and remaining mobile and staying active, using your mind is essential.

Question: How can you tell if the “cog fog” is related to MS or other health issues?

Answer: “Cog-fog” is a somewhat slang expression for the feeling that may intermittently layer onto those with MS giving the feeling of increasing cognitive problems. There is no “officially” accepted physiological explanation for this other than increased fatigue, depression, anxiety. Medically, accompanying issues such as infection or other medical illnesses e.g. thyroid disease should be explored. When there is an acute, sudden onset of “cog-fog” or any new symptom, the treating neurologist should be called to review the situation for something that might be contributing to this relapse.

MSAA’s 2017 Research Update

Posted on June 26, 2017 by MSAA

The 2017 edition of MSAA’s MS Research Update is now available free-of-charge in both print and online versions on mymsaa.org!

Included in this year’s update:

An extensive overview of the most recent FDA-approved disease-modifying therapies for both relapsing and primary-progressive forms of MS.
An overview of MS research progress.
Information on experimental medications.
A summary of new therapies under investigation.
Material on new directions in MS research, including new therapeutic approaches.

Please note that MSAA’s MS Research Update does not include information on any symptom-management medications or therapies. For more information on MS, symptoms, and symptom management, please visit mymsaa.org.

Hidden Symptoms of Multiple Sclerosis We Just Don’t Talk About – (which happens to be all of them)

Posted on June 23, 2017 by MSAA

By Susan Russo

I recently visited my local CVS store. As I was in the checkout line, a gentleman and I struck up a conversation. Our discussion eventually led us to the topic of multiple sclerosis. I mentioned to him that I have MS. With a startled and unbelieving expression on his face, he said, “You have MS? No way, you have MS! You aren’t walking around like a drunk person!”

I just stood there with my mouth agape and proceeded to give him my best eye roll possible. (Eye rolls usually prompt a vertigo attack from me, but it was worth the risk). Then he asks me, “Are you sure you have MS?” I was so stunned by this ridiculous comment that I wanted to throw myself onto the floor or slam into a wall, but I politely refrained.

As I finished paying for my items and stepped away from the line, I noticed a woman giving me the, “girlllll….go-get-em-kick-his-butt look” for asking me such a stupid question. Finally, I said, with the utmost respect for his ignorance, “Yes, in fact, I do have MS.”

Believing our conversation had ended, I headed for the store exit. But this guy apparently decided to push the issue and said, “What are some of your symptoms, if you don’t mind me asking?”

Actually, I did mind, completely, but being the really nice person that I am, I said, in the longest run-on sentence I could muster, “I have burning and electric shock sensations, severe dizziness, vertigo, trouble putting my words together, fatigue so bad, I call it my “wet noodle” phase, extreme mood swings including periods of outrageous, uncontrollable laughter and moments of such despair, I think I’m in hell itself. I also have constant ringing in my ears and oh, yeah, I almost forgot, a really strange sensation of hot water being poured inside me, if you can believe it, and don’t even get me started on the incessant itching in my feet!” But hey, at least I’m not stumbling around like a drunk person!

He looked at me like I was absolutely insane, and said “Wow. That’s a lot of weird stuff. I don’t think you should talk about it because people probably won’t believe you.”

Exactly!

At this point, I wanted to smack this guy all the way to China, but, instead, I said, “God Bless you sir and have a nice day”, then, I said, “I will pray for you. You’re gonna need it.”

Here’s the thing. So many of us with MS don’t want to talk about it. Especially those really weird, unexplained sensations. Because, like the gentleman in the CVS store, people simply do not believe you. And sometimes, that even includes our own medical professionals.

I once told my doctor I could feel electric shocks in my legs along with a “biting foil” sensation. He said, “Well, I don’t know what that is, but I don’t think it’s a symptom of MS.”

Here’s the deal. Some of the most not-talked-about effects of MS are the worst and most difficult to handle, especially if our “truth” is not validated.

We want someone to just listen; to really hear what we are experiencing and acknowledge it’s existence.

When we are denied our “truth”, this says to me that my disease is not real. Well, I’m here to tell you, my MS and it’s plethora of ongoing reality is real. Period. End of story.

So, to that I say, talk about your unseen silent symptoms of MS. Share them with those who love and care about you. They will listen. They will believe.

And if they don’t, just do what I do. Roll your eyes in the back of your head, wave your hand, put a little “sass” in your step and say, “WHaaaatttt-Evvvvvr!”

Then, quietly walk away and pray you didn’t just set off a major episode of vertigo.

Cognitive Changes

Posted on June 21, 2017 by Angel Blair

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.

There’s an Earthquake Happening Inside My Body

Posted on June 19, 2017 by MSAA

By Penelope Conway

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.

To me, multiple sclerosis feels like an earthquake went off inside my body and different body parts are experiencing continual aftershocks.

I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.

I sat there staring at it thinking “Okay, you can stop now.” After some time it finally subsided a bit but still goes on these crazy binges from time to time that I have no control over. I have a weighted wristband that helps contain the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.

Because of multiple sclerosis my body has been known to jerk and twitch without being provoked, I’ve thrown things across the room unintentionally, and once I even kicked someone…although that one could have been on purpose. I’ll never tell.

I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”

There are times when I may want my legs to move and they won’t, or need a hand to function and it rebels, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case.

Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.

It kind of becomes like that old saying “If a tree falls in a forest and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do weird things.

Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone. There are others of us who understand and face this unseen monster too in some very weird and strange ways.

Normal is no longer what it used to be.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Mel’s Ice Cream Sandwich Cake

Posted on June 14, 2017 by Melissa Young

Do you love ice cream? I do!!!

I am always looking at easy ways to impress my family with quick and delicious desserts in the summer. This one is always a crowd winner. Here is a simple summer dessert using ice cream sandwiches! You can use your favorite ice cream sandwich flavor and customize toppings too.

Ingredients

1 12oz container of whipped topping
1 jar of caramel topping
1 jar hot fudge sauce
1 package of ice cream sandwiches (box of 12)
Sprinkles or favorite topping

Directions

Unwrap the ice-cream sandwiches and lay them into a casserole dish or a 9×13 baking dish. You may have to cut some of the sandwiches to fit your size dish.

Heat the hot fudge sauce in the microwave and pour over ice cream sandwiches.

Pour caramel sauce over the hot fudge sauce.

Add whipped topping on top of caramel sauce. Use a spatula to spread it evenly.

Top it with sprinkles or anything you like on ice cream (Cookie pieces, chocolate chips, pretzels or candy).

Put into the freezer for at least 1-2 hours before serving.

Cut and serve!

B & B

Posted on June 12, 2017 by MSAA

By Doug Ankerman

Let’s be frank. You have MS. I have MS. So we have that in common.

It also means we may have similar problems when it comes to B & B. No, not bed & breakfast. B & B as in bowel & bladder.

Yeah it’s not enough that MS throws a wrench in the works with our gait, balance, vision, emotions, memory, dexterity and much more – but it also takes a swing below the belt with potty stuff, namely lightning-fast urgency to go and crushing constipation.

But after over 20 years of shared bliss with multiple sclerosis, I’m used to it. In fact, the bowel and bladder have become such an influential part of my life, I carry their picture in my wallet.

Every day my bowel & bladder taunt me, tease me and pick on me like two older brothers raze the youngest sibling. So I must stay close to the little boy’s room. At times it’s like being tethered to the toilet. I feel like an astronaut on a spacewalk, only getting so far away from the ship. Or the bathroom in my case.

As a result, I believe my bladder has some type of built-in sensor, like a urological GPS unit.

It knows the location of every restroom near and far. And like a dog, I must leave my mark in every one.

Another element of MS you probably already know…is the closer you get to the bathroom – the more urgent you have to go. Sometimes my urge is so strong I begin the whole “unsnapping, unbuckling and unzipping” process before I get the door closed.

And be warned as the “festivities of going” usually begin as soon as your foot crosses the threshold of the bathroom. The bladder figures “Hey, I’m in the war zone, might as well fire the first shot!”

I could go on why we MSer’s are so consumed with our “B & B’s”, but what’s the point.

We really aren’t that fond of these vital organs, they simply control our every movement…Strike that (Poor word choice)…MSers must keep close tabs of every nuance of our faculties.

Just add it to everything else we have to be aware of, right?

Keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

Umm, I Have a Question…

Posted on June 9, 2017 by Ro Washington

All this month we’re highlighting some of the least talked about symptoms associated with MS. Some of which can also be some of the most embarrassing symptoms to arise from an MS diagnosis. While there is a lot of territory to cover, one of the things that remains the same is that it’s often difficult to discuss these symptoms with friends, family, or even a heath care professional. It’s one thing to mention to your doctor that you are feeling dizzy or having difficulty with heat, but it’s a far different thing to mention that you are having concern over loose bowels or sexual desensitization. While not easy conversations to have, here are some tips and hopefully helpful tactics to use when you have to bring up some of the lesser talked about concerns you may be experiencing.

Use Your Own Words: Too often we try and get technical or complex in our explanations of medical concerns. But explain the problem to your physician or medical team in words you understand and using language that allows you to explain what is going on.
Be Honest: It’s habit that when someone asks how we’re doing we’re almost totally conditioned to say “Fine, I’m Fine.” But leaving out details or not wanting to burden your physician during a visit could spell out trouble for you down the line. Be honest about what has changed or is new with you when you speak with your physician or medical team and let them know what’s going on.
Don’t Miss Appointments: I know this one can be difficult depending on your situation. But making your doctor’s appointments with some regularity gives you an opportunity to be more comfortable with them and for them to get to know and build a rapport with you. Missing appointments too often leaves gaps in your chart and care that might make spotting or explaining unusual symptoms or embarrassing concerns more difficult to confront
Keep Records: There are lots of things we document – when our car needs an oil change, when our kids have soccer games, that meal we had last night on Instagram. We document everything from what we buy, to what we think, and everything in between. Make this apply to your health also. Document changes you notice, feel, experience and any information you can attach to it. This may seem a bit much but when you need to recall how long the mouth dryness lasted or your vision was tunneled you will be glad you kept good records. Having a tracker like the My MS Manager™ app can help you keep all your notes in one place and have them to refer to when you talk with your physician
Know That You Aren’t The Only One: We often don’t want to discuss embarrassing or strange things that occur to us or we experience as part of our health, for worry that we’re the only one having this problem. Even if it is a rare side effect or symptom, the odds are you are not the only person who is experiencing it. Put your mind at ease and know that of the hundreds of thousands of others living with a diagnosis, the chances you are the only one are pretty slim.

There are a bevy or symptoms that are less experienced than the more well-known ones, but that doesn’t mean you shouldn’t discuss or get answers for them. Knowing who to ask your questions of is another good point to remember (we’ll call this a bonus one). Deciding to have medical conversations with a medical professional or asking mental health related questions of a therapist or counselor give you the best chance of getting some answers. Yes, your neighbor or relative may be able to answer them for you, but making sure to connect with the right people is key to addressing many of the concerns you may have.

Who Wants to Know?

Posted on June 7, 2017 by MSAA

By Lauren Kovacs

MS has so many symptoms that it is hard to pick one that is talked about the least. I will pick the most embarrassing, potty issues. Admit it, no one touches this with a 49 1/2 foot pole.

Doing “the pee pee dance” is not often brought up. Most moms can pick out a kid doing it though. Dancing is not usually an MS thing either. A pee pee wiggle or shift is all many of us can do.

One minute you are fine and the next minute the dam is about to blow. Not much warning is how most of us roll. Ladies after your period, I know you are draining off that bloat.

Your skinny jeans don’t fit because of the bloat. Skinny jeans are hard to peel off quickly when you got to go, NOW! You can’t wear them any way. Leggings are a nice alternative.

I was never a fashion plate. Being trapped in girls sizes never allowed for much sexy dressing. Being tiny does, in fact, carry some serious disadvantages. Getting things tailored is not exactly practical for me.

Now, I am looking to replace my cute zipper/button shorts with the pull-on style. Easy off when I really got to go. Plus, pulling them down or up, with one hand while using the grab bar for stability with the other is easier.

While athletic shorts are not super flattering, they give me a fast pass to board the potty. Bikers shorts underneath then help keep an incontinent pad in place. That is a mental crutch for me. It is there just in case. I only employ that strategy on long trips. I worry about peeing myself a lot.

Now I stop to tinkle at every place possible. It drives my husband and sons batty. My young iron bladder was replaced long ago by pregnancies and age. Then throw the MS into the mix. Bad combo. Kind of like when my son dips watermelon in ranch dressing. The combo is never good.

On a trip to Canada a few years ago, I used the potty every chance I got. My husband joked that I peed my way through Toronto. Maybe, but I felt secure in my bladder. I never worried about the dam breaking.

I can’t think of potty accidents as being no big deal or just an MS thing. It can be crippling to plan around and deal with. The worry and fear of potty accidents are very scary monsters. They are very real monsters for MS folks.

I always make sure my bowels are clear, before I leave the house too. I get up and begin my day, before everyone else. This gives them the signal that they need to be clear. Gross, but still an unspoken MS thing.

I carry extra pants/shorts in my purse. I roll them and secure with hair ties. Guys may have to carry a man bag. Sorry dudes. Some things you can’t stuff in your pockets.

I went from a diaper bag with stuff for the kids/babies to a large purse. The kids are older now, but tissues, sunscreen, Purell, Advil, Band-Aids, cough drops, and the like are always needed. In a way it is the family bag. Someone always needs something and my purse has it.

Prepare for the worst. One thing I learned from my sons in Boy Scout is to always be prepared. My purse is heavy, but someone is always digging through it. They make fun of its weight, yet my purse is essential to the entire family.

Worrying about potty issues will not rain on my parade. If the storm comes, I am prepared. Make room for worries like fatigue and heat and not potty issues. Try and live the wee bits of life that you can.

Trying is all we can do. Ask a fellow MSer what they do about potty issues. (Go for someone of your same sex. Plumbing matters). Chances are that most will be happy to share. It is mortifying when you have an accident. Have a plan in mind. I am the typical “worst case scenario” lady, but at least I try to be prepared.

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