About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

MSAA’s 2017 Research Update

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.

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

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.

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There’s an Earthquake Happening Inside My Body

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.

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B & B

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.

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Who Wants to Know?

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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Dealing With Embarrassing Symptoms: Constipation

By Stacie Prada

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally.  Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss.  Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking.  People living with an illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common multiple sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss.  Try to get over the embarrassment of bowel problems.  If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time.  You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem.  They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it.  Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command.  The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally.  It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this.  With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements.  While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

  • Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
  • Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere.  It may require getting up earlier and taking more time in the morning.
  • Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical, or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
  • Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
  • Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
  • Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
  • Bowel training:  Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter.  The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.
  • Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement. A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
  • Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid, and tea form available to soften stool if needed.
  • Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
  • Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple.  When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms.  Be courageous.  Be confident in your duty to advocate for your well-being.  Be a good example and resource for others who may need to find their own courage to do this someday.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with multiple sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Memorial Day 2017

Memorial Day is regarded by many as the unofficial opening of the summer season.  You may celebrate with family cookouts, a day at the beach, a relaxing day at home, or at a local parade.  However, it is also important to remember that Memorial Day is set aside as a day to remember all of the service men and women who have fought and died for our country.

On this national day of remembrance, MSAA honors all of the men and women who have fought courageously for our country and given their lives in its service.

Please note that MSAA’s offices will be closed on Monday, May 29th in observance of Memorial Day.  We will be back on Tuesday, May 30th.

Have a safe and happy Memorial Day!

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Summer…Here I Come

By Penelope Conway

Summer is almost here. It’s a time for pool parties, vacations, picnics, gardening and concerts in the park. With multiple sclerosis it’s also a time of fatigue, weakness, and heat sensitivity that tends to make all my symptoms a gazillion times worse.

The warmer it gets, the more numb my body becomes. I can actually feel the numbness as it creeps up my arms and legs, and as it works its way down my face, neck and chest. My vision becomes more blurred and I lose color clarity in my left eye which can be quite weird. My legs won’t cooperate with one another, I drop things more frequently and naps are a necessity.

Summer for me is a great struggle as I select between the things I know I can do, those that I can’t do and the ones I decide to soldier through limping and dragging my body along. I know one thing for sure: the inventor of the air conditioner should have been given the greatest achievement award that existed at the time because without it, I wouldn’t survive.

Not only do I hibernate in the winter, I do so in the summer too. MS and heat just don’t mix together very well. My body can attest to that.

If I have to be out in the heat of the day away from the coolness of my indoor environment, I try to plan around the hottest times by doing things in the mornings before the temperature becomes unbearable. When I can’t plan around my mornings, I make sure to have ice with me in one form or another in order to keep my core temperature a bit more controlled.

Ice vests are awesome. I never thought I would like wearing one because most of them aren’t very stylish. I thought I would look like a fisherman wearing a tackle box or a construction worker packing pockets of nails, but they actually aren’t so bad. Most of the time people don’t even realize I’m wearing ice. I’ve turned it into my own personal trendy style. Even healthy people get jealous and want one for themselves.

I also try to keep ice water with me to sip on. Sometimes just holding the cold bottle is enough to get me through a bad moment. That and wrapping a cold wrap around my neck help tremendously.

My freezer has a shelf dedicated to ice packs for my vest, frozen neck wraps and partially filled water bottles frozen and ready to be topped off with cold water. It’s amazing how much ice gets me through a hot day outdoors.

Air conditioning, ice and careful planning are my summer norm now. You may not find me hanging out at the beach watching a game of volleyball or spending the day at an amusement park waiting in long lines for the roller coaster, but I will still be having fun and possibly eating a snow cone or two.

Yes, multiple sclerosis has limited me. That’s a fact. But even with my limitations I am able to do things that I never thought possible thanks to innovative technology and devices that help to keep my body temperature regulated. Summer…here I come!

Oooh…I think I just heard the ice cream truck going down the road. Help. Does anyone have a dollar I can borrow?

*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.

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Summer is the Carnival of Life

By Lauren Kovacs

Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.

MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.

Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”

Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.

Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.

Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.

Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.

Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.

The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.

Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.

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MS Conversations Named One of the Best MS Blogs

Last week, our friends at Healthline published their list of the best multiple sclerosis blogs for 2017, which includes MS Conversations!  Every year, Healthline compiles a list of the best blogs for the MS community based on the information provided and the personal stories shared throughout the year.

MSAA is thrilled to be included on this list, and we would like to thank all of our contributing writers and our guest bloggers, who share their powerful and unique perspectives on living with multiple sclerosis with us every month!

Check out the full list of winners on Healthline’s website.

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