I tell you that I just love these sayings. I have had this problem with Cognitive Condition with these flutters and so forth for about 10 years and around 70% now and this is way worse than the physical limitations. I have figured out to stabilize the physical between the Avonex Drug and working my ass off in the eating and working out department. I told my Dr. that these flutters and the Brain Cognitive Condition is way worse that the physical because you don't know when it happens or how but the physical you can tell what is going to happen the day next and so forth till it either kicks itself out back to being stable or it won't. I am also out of ideas on how to control it, done the post-it notes, reminder list for myself, etc.
I got tell you that I like this saying of "Brain Farts" . This explanation just made my day. Thanks.
Yeah brain farts, brain constipation....I am loaded with imagery. LOL
I feel the same as you do...I feel like I could handle the physcial limitations better than the cognitive ones.
And all the suggestions of what to do...they only go so far don't they? After awhile you need reminders to remind you to look at your reminders.
It is a crazy life isn't it? I am glad others understand what this can be like. Thank you for your comment.
You got that right. I have been trying to figure this Cognitive Brain Farts now since 1995. Just when you think you have a handle on it to a point it does something stupid to you and then your way back where you started again. Doctor said this is worse than the physical and they can't do anything where at least there is medication and physical things you can do to control the physical.
What is this disease going to kick us with next? I know this is not a terminal disease but come on. Like my girlfriend who when through Breast Cancer a couple of years ago (who is fine now) that I will live all long time but I go that "It will be hell all the way!" Remission would be nice or even a actual vacation, NOT !!!!!!
Oh well, it could be worse, we could have Lou Gerricks Disease.
Thank you for a great Post that I am sure many of us can identify with in various ways. I denied I was having any cognitive problems for the longest time until I was supposed to meet my former employer for dinner last winter. It was snowing so about 5 p.m. I called her to say let's meet at the restaurant, rather than have her go out of her way to come to my apartment first. She laughed and told me I'd called her earlier and said the same thing. Imagine my embarrassment, then, when the phone rang at 6:30, and it was my former boss asking me where I was. She was sitting at the restaurant, and had been since 6, when I was supposed to meet her. Not only did I have no memory of my two phone calls, I didn't remember I was supposed to meet her at all. It was in my calendar, I was dressed to meet her, but in the course of an hour it was all lost. I quickly jumped on my scooter and met her, fortunately we were meeting at a place around the corner from me, and we had a good laugh.
I don't really feel like laughing when something like this happens, I worry about what else I may have forgotten and what the future holds, but it makes everyone else feel more comfortable if I laugh. And sometimes a situation can be funny, even if it is a kind of macabre humor.
I do a lot of writing and recently have been doing some public speaking so my failure to find the right word is most frustrating, especially when it is a simple, commonly used word. Sometimes I catch myself before i write or say the wrong word, but many times it comes out and I don't even realize it's wrong. Many times when this happens a person will try to make me feel better and say that it is just menopause, and that it will pass. Well, I am not in menopause, and what is causing my problems is not going away, but I just smile and say, "You think so?" I have given up explaining myself to everyone, so unless it is family or a close friend, or I think a person really is interested, I just smile.
One last thing, and sometimes this can be funny. I was the queen of multi-tasking when I worked but now I am lucky if I can do one thing at a time. I used to be organized and able to get out of my house to work or an appointment in no time flat. My daughter teases me now and says she's going to video me when I am trying to leave my apartment; I am back and forth putting together what I want or need to bring with me, making sure what I need is in my pocketbook or briefcase, depending on what I am carrying, getting my coat and scarf, and maybe hat, in the winter, etc. Since she's pointed it out I realize that what used to come as second nature and took a minute, now requires thought and can take up to 5 minutes. And I will often get out to the sidewalk and remember something I didn't bring! But the walk/scooter ride back into my building and to my apartment is long, so unless it is critical, I do without.
I don't expect others to understand what I am experiencing or how it makes me feel, after all they haven't experienced it. I do wish, however, people would stop trying to make me feel better by telling me what is causing certain symptoms when they don't have a clue, or insist that it isn't so bad and/or will go away.
Most of the time I just try to cope and not say anything about these changes in my behavior, I wish others would do the same.
I know...you really do have to have a dark sense of humor about it all.
I keep thinking of myself as a computer which keeps needing to reboot. Or that robot on Lost in Space who gets all worked up and has to shut down.
I love your honesty in sharing these experiences. They can be humbling no doubt. People do want us to feel better so they tells us that we are just getting old. But...yeah...this is no consolation. and it is inaccurate that getting older is causing this...it is the MS.
Not sure what the answer is...but I am glad we can talk about this openly. I want to thank you for putting yourself out here in telling people...the way it truly is to have MS.
Thanks for your kind words. I too think it is important for us to share our experiences and our feelings about them so that we can all understand that we are not alone on this convoluted journey that MS takes us on. There are some days on which I feel fairly normal, although they seem to be less frequent than they were just a year ago, and other days on which I wonder who has taken over this body. I don't expect everyone to understand what this feels like, but I do value the people I've met through this and other sites who can understand.
You always write about such interesting topics and you write in a way that generates a lot of comments, which is what this is all about. Thank you for getting such lively conversations going.
Denise
I've learned that it is important to maintain a sense of humor. If I don't laugh when some of these things happen, then I'll cry and I don't know if I will be able to stop. Humor has gotten me through a lot in my life and it will continue to be one of my strongest tools in coping with MS. Thanks for sharing. Denise
I'm really sorry to hear that people feel suicidal because of all of this stuff. Brain fog was one of the sx that made me decide to take early retirement. I was teaching a class, forgetting what I was talking about, making mistakes on the blackboard, forgetting pupils' names, losing my place when reading something to the classes or when someone else was reading aloud, losing words in 3 languages, not being able to get out a clear sentence.
Things have only gotten worse over the last 7 years. I hate talking on the phone, especially with strangers, because I get totally flustered and have a hard time trying to get out of the tangle.
More than anything I find this all frustrating. Forget memory and remembering to pass on messages or get something done. I need triple time at least to do any task. I try to keep tasks outside the home to one a day, not more so I don't end up beyond fatigue by 10 a.m.
Suicide never, at least not until I'm totally disabled. I don't really intend to let that happen to me.
Life is good, life is beautiful. We just have to keep things in perspective.
Peace, Serenity, & Pain-free days,
Maris in Israel
Yes I hear you...mental fatigue gets to me too. What I used to do with ease...I have to take such a long time. Things like paying the bills, my writing, anything which requires concentration...it is like fighting through giant spider webs.
There is joy in life. Sometimes the realization is bittersweet...that life is not what we had expected but...there is still much to look forward to. I am naive perhaps for saying that...but I will hold onto that belief.
Depression is a huge problem with this disease. I am about to post an article about some of the darker elements to having MS. One of them is...more people are prone to thinking about suicide. I have been there myself...through my depression alone...not even with this extra added MS stuff...so I understand when someone feels that way. Life is hard and...sometimes we cannot see the light. I am really hoping that this forum will help...anyone who needs it and finds themselves in that place of darkness.
I do thank you for sharing your insights and experiences here. You help others when you do so.
i was so glad when i found out that ms caused these things and i wasn't losing my mind now i just blame every thing on ms. i'm fine it's the ms that lost my mind if you don't like it go home. i'm gonna have a good laugh.talk to you tomorrow when my words come back happy fluttering (cute word) djax59
Thanks,
I'm really down right now about all this. I don't want MS but I want my symptoms addressed and somekind (anykind!) of diagnosis. The docs keep saying things like, "You're right to be worried, but we need to rule out everything else". The symptoms are like waves and the waves are getting higher and higher and closer and closer with no calm seas between anymore. I came out of the brain fog and into the light of day about a month ago but I see the next fog bank rolling in thicker than the last. I guess that's enough with the stupid metaphors but I thought I'd use my double digit IQ before it reverts back to single digits and I don't "get" jokes anymore.
Thanks for listening!
I'm really feeling low right now. Yesterday my General Practitioner told me that he and the neurologist will not take any of my visual symptoms into consideration for a diagnosis of MS until the tumor is removed from my eye. They don't consider the tumor to be malignant and they are in no rush to take it out (next appointment with eye doc is not until July 13th! and the surgery will be after that since the surgeon only comes out here twice a month), so basically they are just blowing off some of my most annoying problems (double vision, flashes of light, colors not matching up between eyes, etc.) I don't blame the doctors at all. It's me and the system and I'm in.
Now the cognitive problems are right around the corner. I'm sure I'll say or do something stupid soon to make it appear that I'm incompetent as a husband, father, or employee. I cry.
kj. try not to look ahead for the dark rolling clouds. i know it's hard, but it might be a self fullfiling prophesy. have you talked to your md about the meds they have for depression. if one doesn't work try another until you find one that helps. of course i usually have the insurance co. tell me no. i guess they think they're smarter than the neuro.try to find your happy place. if you can't go out to commune w/nature look out the window find a focal point, tree the squirrels any thing that give you a sense of peace. chin up djax59
Thanks, I'm on anti-depressant for PTSD and also a beta-blocker for tremors that calms me down. I went out to the gym this afternoon and worked out for awhile, then sat in a sauna (just so I could see the little flashes of light and pretty colorful donuts in my vision [LOL]). A cold shower and I'm feeling better in all ways.
Cognitive issues are the worst for me and seem to be coming back after I recently shook off the cobwebs. I start a two week training course out of town on Monday and I'm hoping I can hold it all together and actually learn something. Maybe staying in a hotel where someone else is cleaning up the room, and eating in restaurants for a few weeks will help.
Thanks for your encouraging words and concern. I appreciate it more than I can say in words.
KJ
Hi KJ
I am really sorry you are having such a bad time of it right now. Wanted to let you know as well as others that Health Central has a wonderful depression site...I am the Community Leader there and also a writer...and just recently the topic of PTSD was written about extensively...you might find information there which can help. Here is the link.
I am glad to see you talking about all this. I know it is very difficult.
Hang in there okay?
Thanks,
I checked out the other site and I think I'll be spending more time there in the future. I saw some other familiar names there as well.
The overlap between neurological problems, PTSD, and an eye tumor really feels overwhelming for the past few days. I went home and spent a week with my family, but I'm back in Virginia since Thursday and living alone again. That doesn't help. I'm doing a two week class starting tomorrow followed by a 10 day class that I am partially teaching. I would enjoy all of that if it wasn't for the flutters and the sense that they are on the upswing again.
I spend a lot of time on this site and feel there is a lot of support and positive energy here even though the subject is so negative. I would much rather pass on some encouraging words to others than solicit them, so hopefully my pity party will be over soon and I can move on.
Thanks for help. I really appreciate it.
Oh, I have one other positive suggestion for people here who think they have cognitive problems. Get tested! I went through a three hour neuro-cognitive test a few weeks ago. We did word games, memory games, manual dexterity exercises, etc. The results were eye-opening and came with recommendations for coping with identified problems. I think the potential best benefit for people here is that it sets a "baseline" by which future changes can be measured. I took my test at a "good time" and my intelligence and long-term memory were very good. Short-term memory was a little below average. Word-finding and manual dexterity were really bad. I think if I had had the test just a few weeks earlier I would have done much worse with short-term memory.
kj keep in mind that i've had 36 years to get used to this MonSter and have time to put this in the" you have to laugh at it" category. i don't have nearly as much going on with me as you do. but i still have pity parties. if itry not to its much worse so i allow myself. depending on that particular thing is how long ii decide it will last. and yes they do run together and all on top of each other. most of my depression is situational, but ms can and does cause chemical changes in your brain. from another post, to my understanding you don't really lose your ability to think and learn things you still take in the information and file it away. its your retrieval system that is screwed up. in time you will be able to be giving helpful advice and encouraging words. when you have found the answers for yourself. chin up djax59
Wow you describe me to a tee.. and it is so frustraiting when I try to explain what is happening and people tell me that it happens to all of us and that it is nothing. I wish there was a way to make people understand how MS is effecting me mentally though I look fine as people tell me too. I have been diagnosed in March and it is so hard to put all this in my brain which is not responding the way I want it to. It is a relief to know that others are going thru this too and I am not the crazy person everyone seems to think I have become.. I feel lost at this point and not sure what to do. Thank you for sharing with me..
For me, it's not only friends that don't understand, but it's also a husband. When I get frustrated, I hear "it's just a sign of our age and stop thinking everything is due to MS". We're in our 40's. I've considered quitting a job due to the fog. I've worked in healthcare for over 20 years and it used to be second nature. Now I forget where I'm at when teaching, can't put my thoughts into clear sentences and forget what people have said to me a few seconds after they've said it. I also have the frustration of a husband and friends who want to be 20 again and like the party scene. 2-4 nights out a week. I've basically resigned myself to staying home alone while they are out and only worrying about how good they look.
I've had to give up driving long distances (family lives 5 hours away) because of mental slowing and the joy of seizures due to brain lesions.
I commend anyone that can find humor in this brain fog.
Hi there
No...you are not going crazy. MS does this sort of thing. The thing is...nobody tells us these things might happen. All the focus is upon movement. In some ways problems with movement may be easier to adapt to...but what to do about messed up cognitive wiring? I dunno.
Maybe I will do some more research and see what treatments or remedies there are aside from post-its.
Hi guys, Aricept really helped pull me out of the fog. It was designed for alzheimers patients but it they are starting to use it on MS patients. It took about a week before I notice the changes; but it really works. I've been on it for 2 months now and it helps with the fogginess and make things more clear. It doesn't help me with my memory though; but I feel more like me mentally.
For my fellow limbo landers; try to keep yourself positive. IF you do not like the answers you are getting; find another doctor. I had to apply to be seen at a MS practice here in Dallas. My doctor had to write a letter of referral and I had to complete a 23 page questionare. They have doctors review them and then decide if you warrant being seen by their practice. I received an appointment. My current neurologist told me 3 times that it wasn't MS. Then after all of her testing coupled with my Pcp's testing; proving that I had cognitive as well as physical impairment; she has finally stated that I definitly have an autoimmune disease and it is possible MS.
I had to see an Optic Neurologist because I was having trouble with my vision which included a couple of bouts of double vision and constant on/off blurred vision. It turned out in the beginning-2 months ago- to be disorder of the optic nerve- however, while under his care I developed acute Horner's Syndrome. He ruled out the other possibilities of the disease and said it was related to an autoimmune disease. Yesterday, after his intern was looking at me; they finally saw my "bouncy eyes" (which I've complained about for years.) and diagnosed that as opsoclonus; also related to MS.
My point is I am on the road to diagnosis; but it still may take a long while. I have no evidence of lesions on my brain that they can see. My pcp said that it is going to come the hard way; but it will come.
Try to find the humor; I know that it is hard; but it really does help!
Hey Holly!
Wow...this is excellent information. Thank you for telling us about that medication. I am going to look into that. And it also sounds like you are being very assertive and finally getting closer to a diagnosis. I hope KJ in particular reads your comment here. I feel for those of you in Limbo. I wasn't in limbo long but it is so emotionally hard.
Thanks again for your comment...and I hope you are having a lovely weekend!
My "flutters", One time my husband came home from work and caught me in the bathroom washing the toilet paper as though it was fine linen. I would throw things in the trash, like my fine jewery, beaters to the mixer. He would check the trash every day before taking it out. My kids would tell me that I said they could do things that I would have never let them do. I don't remember alot of their childhood or things we did. I remember one day my mother was in the hospital, I took my dad to see her, it was a very hot day. I throught my airconditioner was broke, it wasn't, I just couldn't remember how to turn it on nor could I figure out how to trun it on.
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I am somewhat in awe of the calm way you have talked about these "flutters". Are you calm about the progressive march of these syptoms? Maybe I should be but frankly I'm not. I do as much as I can to adjust to my new life. It is diffucult and very tiring. Yes spontanity is mostly gone and I am sad.I am right at this moment trying to meet my anxiety with determination. I am tired of the constant fight to adjust even the smallest detail of my life to MS. Sometimes it seemingly takes "a cast to thousands" to do the most simple things. I congradulate myself for going forward but I am sad. I know I need to be accepting oif my condition and calmly plan and make adjustments but when I think about possibly losing the ability to think I really feel sad.
Dear tellnhelen -- Oh, I soooo relate to your sadness! Someone complimented me on dealing so well with my daily "challenges" and I corrected her: it's my daily "torture" - not my daily "challenge." It's torture that I feel so crappy in the morning when I wake up, and three hours later I feel terrific - followed five hours later by being in pain that rates an 8 or more on a scale of 1-10 so then I need to take a whole Vicoprofen to keep the pain at bay... and then needing an enema before bed because the pain meds have made me constipated... and that's a good day!
It's torture when I have to change my thickest pantyliner for the 5th time that day already. It's torture when I have to change into clean PJs for the 3rd time at night. It's torture when I'm in a store and my bladder involuntarily spasms and I have to pull my shirt waaay down low so no one will see that I've leaked.
It's torture when during an aquatics class I have to rush out of the water in the middle of class, wrap a big towel around me and quickly sit down and pee into the towel, knowing I could never walk the 40 yards to the restroom and make it there in time.
It's torture when in the middle of fooling around with my husband I have to excuse myself to go pee. It's torture that I live in St. Louis where the heat and humidity are unbearable 6 months of the year, and it's torture going anywhere at all when it is warmer than 71 degrees outside - I feel like I'm being suffocated and can't breathe. It's torture when I have 5 errands that I'd like to get done and I konk out after the 3rd one and have to go home and lie down.
In 3 years my bowels have involuntarily spasmed and "evacuated" three times, luckily two times in the car with only my husband present... (thank God I have leather seats) and once while at home.
I ask myself: how much more of this can I take? My husband and I keep adapting as each new "symptom" reveals itself, but seriously, this is crazy. A dear friend/neighbor of mine with MS (who was also diagnosed with PPMS 4 years before me) was just put on Hospice. I can't help but be somewhat jealous of her: the end of her torture is in sight.
Yes, I do still experience some joy and happiness, and I choose to dwell on the good days and not on the not-so-good days. But I'd be a whole lot happier if I could take control myself of deciding when I've "had enough" of this torture and end it quietly, painlessly, and quickly once and for all.
We need to push for assisted suicide to be legal in more states than just Oregon and Washington. I heard recently that Iowa and Montana will be next in line for legal assisted suicide.... This is what gives me hope! Not hoping the scientists come up with a cure. Heck - they don't even know what causes MS - how can they find a cure?
Don't want to die --just find the strength, spirit, faith, fortitude..whatever it takes to overcome the sadness and fatugue of living with it. I hope/pray that you will findways of dealing too. Hey..you get to fool around?
Heidi,
I sympathize with what you are going through. Not only was I diagnosed with MS 4 years ago, after my mother died of the same disease at 69. I got to watch my mother slowly wither away from the this disease since I was a teen. She lost all function and ended up with bags everywhere. One to collect her urine, one to collect her bowel movements , and the loss of all of her physical functions. This is truly a disease that I find no comfort or humor in.
I've been blessed with very little pain, no incontinence, no physical problems. I only get the future of losing the ability of taking care of myself.
Hi Tellnhellen
Well...I will tell you a secret. I have a lot of defense mechanisms...one of them is humor. But underneath...yeah...I am scared as anything.
My personal background sometimes helps me too. I grew up with a mom who has paranoid schizophrenia....I went to school for psychology, special education, and social work. I worked in the field of mental illness and disabilities. And my youngest son has autism.
So basically my whole life has been where I am immersed in strangeness. I am used to seeing neurological problems and helping others to adapt to them. So this fact makes me feel more confident that I am going to be able to handle what comes. But...yes I am still frightened. I have always relied upon my wits to keep me alive and...what if I lose parts of my cognition?
But in the back of my mind...naively...I think that I still have control here. Maybe my body and brain betray me...but I still have enough brain cells to outwit my disease if you will.
Life...is a series of adaptations always. No life is unscarred. There will always be something to contend with.
Calm? Me? nahhh...just resolute that....I have to deal with this the best way I can. And writing...is one way for me to do this.
I really appreciate your comment. I love your honesty. Please don't stop sharing your insights here.
Hi Heidi and Anonymous
I always feel at a loss when...someone says such profound and honest things. I have no words to make this any less...hard. I am not going to give you any plattitudes or cliches here. That would make a mockery of us all.
All we can do is try to stay afloat the best way we can and one of the ways is by doing exactly what you are doing...to share your experience...however heart wrenching it may be...with others.
I wish I could make the MS go away. I really do....and for all of us.
heidi, your mother's ms is not your ms. its a disease that affects every one differently. i've had it more than half my life. i do have a supra pubic catheter for the last 9 years, i use a cane for balance and fall down alot (i've gotten quite good at it) but i'm basicly healthy, really tried to keep a sense of humor. i thank the powers that be that i am doing so much better than i could be. try not to let it get you down. djax59
i can surely sympathize with the incontinence problems. before i got my suprapubic cath i wore diapers and wet my pants alot. i gave up on pantyliners and pads very early in the game. the adult products were too expensive, so i used baby diapers just like pads. (that was for 20 years or so. i was dating back then and never had anyone head for the hills about it.) try different one's till you find one that works, carry a spare and try not to dump your purse on aisle 6. djax59
You make me laugh "try not to dump your purse on aisle 6."
Thanks. I needed that!
Heidi
djax59 --
btw: what is a "suprapubic cath?" And how will I know I'm ready for one?
Heidi
a suprapubic catheter is one that goes into the bladder through the lower part of the abdomen. personally i'd keep using diapers for as long as you can then have a long hard talk w/ your urologist. it has its funny moments like when your grandkids announce to the world that you have 2 belly buttons. but i have had problems too. i've been looking for 9 years for someone else that has one so we can maybe talk about common problems. i can surely sympathize & empathize w/the problem. djax59
djx59 --
So do you then have a bag that collects urine? Or do you just insert a tube into the new "bellybutton" to empty the bladder?
heidi , the catheter is there for good,except nfor changing, i have a bag that i wear on my leg wheni'm out and about and one that hangs on the side of the bedwhen i lay down. or on the back of my pants when i'm up in the house. i started to go some place the other day and had to come back into change my "purse" djax59
Thanks for the info, djax59. I did neet another woman with the same thing at a conference a couple of months ago. Her "purse" was in the basket of her scooter. Now tell me: what kind of pants do you wear to conceal it?
Heidi
i just wear what i wear. no shorts short skirts. or jeans that are tight in the thighs. i never said it was a sexy attatchment. djax59
heidi, i forgot to mention that i have a smaller bag that straps to my leg when i go out djax59
Oh djax59, a couple more questions...
1) Can you sleep through the night without having to get up to change the bag? [I haven't slept through the night in years as I get up 3-6 times each night to pee].
2) Did you try internittent cath before this? If so, what were your experiences?
My dh is The Best - he told me regarding my weight gain and bladder issues,
"It is what it is. That doesn't mean we still can't have fun!"
heidi, yes i don't have to get up to empty the bag at night, sometimes i roll over and kink the tubing but that's easily remedied just straighten it out. i did try intermitent cathing but my sphincters were shot. i had a constant dribble i could go in any position but sitting on the pot. that gets tiresome really quick. i will say that i haven't been on a date for the last 9 years, i just don't want to explain it, i was kind of fed up with men anyway. that sounds depressing when i see it in print but its not really just a fact of life like ms. i don't hide it but don't advertise it either if someone asks i tell them but don't usually bring it up djax59
I have become introverted. I used to be an extrovert, but as I "missed the joke" or didn't express myself properly one too many times, I caught the looks of others that said "she's so slow" (read stupid). I work with attorneys who tend to be critical and analytical anyway, but my ego is certainly getting VERY bruised, making me withdraw into my shell even more.