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Has MS Changed Your Mood, Thinking, etc.?

I have noticed that I feel very different. I am over-sensitive, don't 'think' the same, tend to 'react',  get irritated more easily.

Has anyone else oberserved these changes in themselves?

Often, I get upset, but I don't know why.....until later.

Sheila
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Avatar universal
You have written so much of exactly what I feel.

I have cognitive issues, as well. Very slow thinking, foggy, hard to concentrate. And I forget new information, almost immediately.

You make perfect sense, because I am dealing with the same issues.

For about a year, I have been waking at 3:00-4:00 in the morning, very hot. Unable to go back to sleep. Then, in the morning, I am very tired. So, I feel it contributes to my inability to think, concentrate.

Like you, I was an avid book reader, since I learned to read. Now, I get distracted. So, I force myself, to read, until I comprehend what I am reading.

Often, I  can't find words, when I am having a conversation.  When I was still able to go out, I had to look at the dashboard, and say, "Blue means cool, read means heat", to turn on the A/C.  Whereas before, I "knew".

I agree, everything is still in our minds, it is just harder to access.

Thank you, JJ, your explanation in your post were exactly what I was hoping to find. I needed to know, if there were people going through, what I am going through.

No apology necessary....we are all walking this MS path, and if we can't find empathy here, where can we find it?

Hugs,
Sheila
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987762 tn?1671273328
COMMUNITY LEADER
Oh sorry, yes cognitively i've changed, cognitive testing shows significant changes but i really didn't need the testing to know that my mind wasn't working as it once did. When i'm dealing with a relapse it's quite obvious and i have a return of specific dysfunctions but still different than pseudo's, with pseudo's I know its more to do with mental and or physical fatigue.

Wow this is hard to explain... slow, foggy, concentrating really hard and i still can't quite follow, forgetting 'new' information, short term memory not automatic. Distracted, Spelling and visual memory off, how to do, how to start, what to say etc is all off. Does that make any sense? Pseudo's exaggerate it all and just like resting/sleeping helps recharge the physical, it does the same with the cognitive, though its never not still there to some degree.

The cognitive changes from a relapse though are more specific, i loose all nouns, and i do mean literally and specifically just the nouns, quite weird and even with out the verbal issues, it makes having a conversation harder. A couple of years ago i experienced for the first time, very obvious short term memory dysfunction, specifically recognised simply because i've been a book worm since i could walk, so what happened just clearly stood out. I could never read a book twice, never because a few paragraphs into 'any' book i'd read prior, the entire book would come back to me, it was a life long pet peeve of mine. oh and my visual memory use to be the same, if i'd seen anything, i could tell you where to find it, be it an object, information etc no matter how long a time frame, it was very very handy to have with my Aspie kids.

One relapse though, my communication issues was making it too difficult to talk at all, so I did my usual and was reading to keep from loosing the plot. I'd just finished reading a book and i couldn't remember anything about it, struggling to come up with anything beyond very general terms, nothing informative.

I knew what was happening (new experience and the opposite of my normal) because of working with children with disabilities and my understanding of brain plasticity, I picked that book back up and read it again, i kept re-reading that book until i could hold onto something, it took me 5 times.  

It does still improve,lapse,improve etc but I never did get back to what it use to be, from my perspective at the time my short term memory fried, any improvement from where i'd gone, was a huge improvement and life changing to me. Theoretically, i could say that I am loosing my mind 'but' with everything I know, and everything I believe in.......it is all still there, just slower to access and maybe harder to get out but it is still there and thats all that matters to me.

golly i have taken all day to write this, i hope it made sense and did go towards getting some answers to your questions. If not please accept my sincere apology for any confusion I may cause, I promise it is never my intent!

Hugs.......JJ    
    
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Avatar universal
Poppy,

I agree with what you said about how MS affects people, depending on their stage of MS.

When I was 1st diagnosed, I didn't realize that I'd had MS for many years, so it had already done so much damage.

I'm very sorry that you have been diagnosed with MS.

It seems, as my MS progresses, my ability to stay calm, rational, has lessened.

I hope very much, that you were diagnosed very early in the disease. I feel, early diagnosis, makes a huge difference.

Sheila



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Avatar universal
You're so welcome, Jeny. Your husband, sounds a lot like mine. Rich doesn't worry about the things that worry me. He always tells me that things will work out.

He also keeps me grounded.

Please don't worry too much about watching what you eat when you start Tecfidera. I learned that MS can cause great weight loss, at some point.

Before I was even diagnosed, I dropped from 95#s to 76#s in 5 months.

I was able to regain some of the weight, once I began Rebif and started feeling better. But then I developed Lymphocytic colitis, and my weight is back down to 74#s.

I agree with you. This site is great-full of wonderful people, always willing to offer advice.

I joined before I was diagnosed.

I left for awhile. But I realized, I still needed my friends here, because people in LinboLand and MSer's are truly the only people that really understand, because we are all walking the same walk.

Sheila
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1637739 tn?1371688706
Thanks for your advice.  Im sure we will make it.  He will learn along the way as I do.   He doesn't worry and likes to deal with issues when they happen which is good.  He keeps me grounded lol.  

I'm sure I will have to watch what I eat for awhile with the Tecfidera.  

It's great having all of you to lean on and ask for advice.  Finding this site was the best thing I did when I found out about my MS.  Thanks :)

Jeny
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Avatar universal
Hi, Deb.

Thank you so much! Consider yourself 'cyber' hugged!

I'm so glad that found comfort in knowing that other people, like me, feel the same way.

I am so sorry that MS has affected you the same way.

(((HUGS)))
Sheila

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Avatar universal
Jeny,

Thank you so much.  I appreciate prayers, more than I can put into words.
I feel, if my Lymphocytic colitis could be put into remission, the nerve pain would lessen.

I am taking the medications, since December, that my G.I. Doc prescribed, and eating so very carefully.

Cream of Rice made with water, (no dairy allowed-due to the casein). Plain white toast for lunch, and again, my husband can only buy one type of bread from Panera. White rice for dinner. A banana for an evening snack.

Yes, since stress worsens our MS, I believe that anxiety would also worsen it.

Oh, I hope you do well on the Tecfidera! I've read it has the least amount of side effects.

I feel, that when we already have the type of personality that doesn't handle stress well, MS makes it so much harder.

You are just like me. I don't always know either, what is upsetting me, and that has been very difficult for my husband.

I think having a talk with your husband, really would help him, understand that your MS is affecting you.

I believe, your husband will walk the path of MS with you. After all, in our wedding vows, we said, "In sickness, and in health".

So, don't be afraid he isn't up for it.

Maybe you can both find support groups. Sometimes, talking with people going through the same thing, is very helpful. He may feel less alone.

Sheila

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1337734 tn?1336234591
Oh Ssheila, I really want to reach through my iPad and give you a great big hug!
Everything you just said to me could have come right out of my mouth!

It really is comforting to know someone can totally relate, although I am sorry you feel this way too. Please feel free to private message me any time you want to talk. :)

(((more hugs)))
Deb
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1637739 tn?1371688706
Oh I wish I had the magic pill for you!  It's not right to have to be in constant pain and not treated.  I will keep you in my thoughts and prayers that phase passes quickly like before.  

I have been wondering about stress making our MS worse.  Do you think anxiety mess help with that?  I've contemplated taking them for a long time.  

I will be startingTecfidera this week and hope that things get better.....therefore less stress lol.  I admit I do have the type of personality that gets stressed easily over little things.  I try real hard not to but just can't stop it at times.  It's one of the things I'd love to change about me!  

I get in little arguments with my hubby because I have trouble explaining or discussing things and it doesn't come out of my mouth right.  I guess I need to have a talk with him and explain it may be my MS.  This is new to us and I don't think he truly understands what my future holds for us.   I pray and hope he's up for it.  That's one of my biggest fears.  We are only 40.  Does he really want to deal with this for the ret of his life?  It's scares me :(

Jeny
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Avatar universal
When I was finally diagnosed, I was so grateful, so relieved to have the diagnosis. And I was doing pretty well for quite awhile.

But I wasn't "aware" that I was becoming over-sensitive. It wasn't until after a situation had occurred, that I would look back, and feel I didn't handle it the way I would have before.

No, I didn't mean the way we think about ourselves, just the way we think, in the sense, that they can't concentrate, as well, or unable to verbilize what they need from others, etc.

Although, I have said, and I will say it again, I don't like the MS me. Because I can no longer do the things I did before.

OK, now I understand what you mean about the words "stress" & "fatigue" being over-used. I agree, the general public, healthy people may tend to over-use those words.

For me, fatigue means an MS exacerbation that causes me to need 18 hours of sleep for days.

And stress, well, in that sense, there is so much negative happening in my life, that I can't deal with it, because I can't 'think'. I can't remember details.
So, my husband has had to take over even more.

My MS Specialist told my husband & I, that stress makes MS worse.

I used to be able to handle everything, without giving it a thought.

(Although, the death of my parents 9 months apart, left me emotionally drained for a long time.) They both suffered serious, long-term illnesses, but that didn't make losing them any easier.

JJ-like you, retail therapy is not possible for me, anymore either. I miss going out with friends. So, that depresses me, when my friends e-mail me and tell me all about what they have done that day.

Right now, I am stuck living with the pain, because I am not allowed to take any pain meds due to the Lymphocytic colitis. The meds make it worse.





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Avatar universal
Hi, Zoe.

Thank you for responding.

It appears that MS affects many of our moods/personalities.

I feel I am the same way, I am irritable, less patient, and I feel it is due to my high pain level.

Sheila
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Avatar universal
Hi, Deb.

I was away from the forum quite awhile.

Thank you for responding.

I agree, it is the disability caused by MS, that has changed my mood, thinking, etc.

I'm sorry MS has affected you in the same ways.

Sometimes my MS fatigue is so great, that I sleep for 18 hours a day, for a week.

Right now though, the nerve pain allows me very little sleep.

And yes, I do feel sad, very useless, as I watch my husband manage everything, the housework, the cooking, the property maintenance.

My husband and I have been trying to talk through a lot of what upsets me, but we both realize, so many things are out of our control.

I'm not the same person either, and we both miss the old me. (:

Sheila
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1896537 tn?1381900009
My mood/personality is definitely been affected by ms. I have less patience and am irritible and my mood is often low. Some of this is due to being in pain etc though...
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987762 tn?1671273328
COMMUNITY LEADER
No to negatives, and if i'm not confused by what you mean, as I mentioned before "i've always been very calm and tolerant and because i've always laughed a lot, i'd of said i was content and happy but after my big bang of 09, i've become even more so. I laugh a lot more than ever before, I appreciate all the little things and i know that sounds corny but its true."

I honestly can't answer with confidence or sicsincly (sp) if its changed my 'thinking' for me that's too open ended, but if you mean change my way of thinking about my self, then i'd have to say not really. I still like my self and have no major changes to how I still see my self as being, but my priorities for my self are different. I've always been independent and self driven, and if anything i am even more driven now, though its more about needs than wants.

My comment "to me stress is a generic term, it means different things to different people, and what one person finds stressful another will thrive on. Life in general has been dissected and analysed and just like 'fatigue' is over used by everyone and their pet hamster, well to me so is 'stress' over used."

I was meaning by the general public, people living normal lives and not those who know exactly what they are because they experience the true definition of fatigue or stress. People in general, use fatigue or stress for normal living but they don't really know what it's like to live with it, both have become commonly used or everyday terms and from my perspective, the over use is degrading them.    

I walk like a bouncing string puppet, which is physically exhausting and I fall over a lot, with my eye sight as it is, driving is not such a good idea, so getting out isn't easy unless I have help to get where I want to go and someone to help me stay on my feet and when necessary, do the communicating for me. A small outing can total me for days, popping down the shops for a bit of retail therapy is not on the cards any more (pitty), so the physical has inhibited my freedom.

Overall, what's changed mood wise for me is basically what I always had, but more of it, if that makes any sense.

Chronic pain is one of the hardest things anyone has to deal with, isn't there anything they can do for you?      

Take care..........JJ    
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1337734 tn?1336234591
I have taken a break from this forum for about a month but I am happy to return. This is an excellent thread. Thanks for bringing up this topic.

MS has definately changed my mood, or more accurately disability has changed me. I suffer from mild depression. At times  I feel sad, hopeless, useless and frustrated.

I cry often and am easily frustrated. I am always tired and prone to anxiety.

I work really hard to work out a lot which really helps my physical and emotional self. But the bottom line is that I am not the same person I use to be. :(

Deb
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Avatar universal
JJ-so, your MS hasn't changed your mood, thinking, negatively.

This was the point of my thread, to learn from other members, if, and how MS has affected their mood, thinking, negatively. How stress affects them.
And I respectfully disagree, I don't believe that the words stress and fatigue are over-used. At least, not my me.

At the age of 60, and with the progression of my MS, I know that I don't  have  many choices in my tomorrows. I accept it.

It appears now, that I have lost too much weight, to do my Rebif injections.
And my husbands insurance doesn't cover the orals.

I watched my 2nd cousin, live with MS for 18 years, and die from it, in 2008.
He lived his life, in constant pain, the same way I live my life.

In what way, has the physical part of MS, isolated you?

For me, the nerve pain has returned with a vengeance, and I am unable to sit up for more than short periods of time. And because of the Lymphocytic colitis, pain meds are out of the question.

Perhaps I should have stated my question formy thread, as "Has MS Changed Your Mood, Thinking, Negatively, etc?" because that is what I wanted to learn from other members.



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987762 tn?1671273328
COMMUNITY LEADER
I do in the main have it together, for me the physical has already isolated me from the world around me but its easier for me to laugh about, lol i'm a bouncing human string puppet and my brain drops me for the stupidest things, [blush] even intimacy can be hilarious, trust me on that one lol

In the physical world, my verbal communication is nothing like it use to be, its more than using the wrong word, loosing my nouns or other words etc. I have a lot of difficulty actually speaking. I slur and stutter or stick on a sound and the words do not always come out. Which can seriously be a pain when trying to have a conversation, and being a talk-a-holic to me not being able to talk, is isolating.

Add, my written communication issues which is basically cognitive and visual (double) and it makes communicating by writing not as simplistic as it use to be, (lol what seems like a life time ago) i use to write a lot, for both personal or work commitments but now it often takes me hours to create a simple post and it does isolate me even more when its playing up.

But wait there's more - no steak knives for me lol actually that's basically it thats relevant, the physical, the verbal and the written and when combined or even separately, it adds up to being isolated by circumstance and not by choice. I am an optimist so thinking about what i've lost isn't something i tend to do, and its hard for me to even think of a negative future.

I can't change the here and now, so it doesn't upset me or even frustrate me,  i still believe the next chapter of my book hasn't been written and i still have choices in my tomorrows. Don't laugh (or do but share) I still feel lucky, and being an optimist I could write pages and pages of why i am lucky but i'd struggle to come up with negatives because my brain honestly doesn't work that way. To me thats just one more reason why i should feel lucky but the biggest one, is that no matter what is happening now or tomorrow, i will still always be little old me and i'm going to hang onto that!

Hugs to all.......JJ        
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Avatar universal
JJ-I struggle, as well, with finding the right words to express myself. It's extremely frustrating when I can't 'think' or I can't find a word.

But don't allow yourself to become isolated because of it.

I have to admit, I was surprised to read your post, because in your 1st post, you made it sound like you've got it all together.

MS affects each of us so differently. But, if you are like me, and battling more than one auto-immune disease, (I'm on #4) it is overwhelming.

I know that my life will never be the same again. And I miss my old life.

I hit 60 this year, (My profile picture is of me at 59 with my sweet Kia, whom I miss so very much. She and Sydney kept me from feeling isolated, when things progressed to the point of not being able to go out. I miss both my sweet girls so much.)

I 'think' what you refer to as needing a "bigger bucket" may be what many of us consider feeling stressed. Sometimes, life can just be overwhelming, and we want to be the strong people we were before.

The hardest thing for me has been learning to depend on my husband.

When I became really sick, in '05, I ended up in bed, for two years with nerve pain in my spine so severe, that he had to pack me in pillows at night, so that I wouldn't move. Not an easy thing, for an independent strong woman.

Now, here we are, married 39 years, and I'm back with that same nerve pain.

It isn't the retirement he deserved.

Hang in there......

(((HUGS)))
   Sheila






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1637739 tn?1371688706
I understand what you a saying.  I too sometimes don't express in words what I actually want to say!  Also when we write or text communication can be interpreted very differently than it was intended.   Don't let this get you down.   I'd say this is just an example how MS affects others.  

((HUGS))
Jeny
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987762 tn?1671273328
COMMUNITY LEADER
Thank you poppy, I cant tell you how much i needed someone to reach out to me with some snippet of support and understanding! Thank you!

Today I wept with the sadness of knowing I have no choice but to accept I am loosing the ability to connect to others, take away my ability to speak, to write and i'm but a shell of what i am inside, an observer and not as i want and need to be. I am kicking and screaming and hanging on with my teeth gritted because it is the one thing, the only thing I can't cope with, isolation isn't where I can go, yet I am and I can't stop it, it just is and I have no choice but to accept and it su_cks beyond words!

I need a bigger bucket!

Look after your selves...........JJ
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4943237 tn?1428991095
Don't sweat it JJ, it's very difficult, if not impossible to always word things in a way that people will take exactly the meaning you are trying to give something, as everyone has very different "frames of reference".

Anyway, back to the topic at hand.

I think how MS impacts someone's mood/thinking etc can sometimes depend on where in the MS journey they are currently sitting.  How I see things versus someone who has had it years will most probably be very different.

As for my mood, being relatively newly diagnosed, I'm still at the feeling really ripped off stage and my mood/thinking, at times, very much reflects this.  I still can't quite believe this has landed in my lap and it's now my 'new' reality.  

Since this horrible thing reared it's head I've noticed that I am much quicker to get angry and have far less tolerance than I used to have.   It doesn't seem to matter how hard I try to stay calm, it just doesn't happen.  Maybe with a bit more time things will improve??

Poppy
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987762 tn?1671273328
COMMUNITY LEADER
Um sigh, shocked at the reaction and I can only assume that I have "again" not been communicating very well. I have visual/cognitive/communication issues, that can make expressing my self difficult both verbally or in written form. I do try very hard to catch it, I spent hours (late last night) writing and re-writing because I knew it wasn't coming out quite right.......I should not assume people will always keep in mind who I am and remember the communication issues I deal with. My problems not yours, my fault not yours, my responsibility not yours!

My intention was to be supportive (!!) but at the same time empathetically thought provoking, I still see that in what I wrote, so I feel both confused and saddened that i've been interpreted in any negative way.

" 'understandably' overwhelmed by a nasty personal bucket load of reality. If your personal bucket is already full, well it makes sense that the next little thing will make it over flow. Lets not forget about having a chronic medical condition, that makes the responsibilities of normal life just that much harder to do. "

"........alternative is the internal you, what your medically dealing with and what's going on inside your head space because of it. Are we sometimes just being too hard on our selves, doing to much, expecting too much etc........when our buckets are full?"

I wasn't intending to imply that I was different (?) because I'm definitely not, I don't think i react to stress any differently to anyone else. Its just that what I find stressful, you might not - what you find stressful, I might not!

I know what makes me feel stress, in those moments I am calm, some say i'm too calm because all my emotions are 'absent', I think its more from learned self protection. With each additional 'moment' my personal bucket of reality keeps on steadily filling, and when it over flows, I like anyone else 'understandably' fall apart.

I am sorry if i've given anyone a negative impression than what i thought, never my intent and not how I am but its time to take a break before my reality intrudes on others once again.

Take care of your selves........JJ
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Avatar universal
Jeny,

You've stated that very well. MS affects each of us differently.

For years, I was an Extraordinary Minister of the Eucharist. Served at weekday morning masses, 3 days a week, & two masses on Sundays

Scheduled the Altar Servers, Lectors, etc. Held Communion Services, when my former Pastor was away, and being a Missionary Priest, he was away, most of the summers.

I was in the Sacristy by 7:15 every morning.

I served at more funerals than I want to remember.

I worked all of the Funeral Luncheons at our church. Spending 6-8 hours on my feet. Worked our church's Fish Fry, every Friday in Lent, and the 1st Friday of every month.

I buried both my parents, my Dad in '97 & my Mom, 9 months later, in '98, after years of serious illesses.

I thank God I was still healthy enough to take care of them.

Today, my MS has progressed to the point, that I no longer am able to leave the house, and getting ready for doctor appts. causes me so much nerve pain, that my husband has to use a Homopedic massager on my spine, tush, thighs, just so that I can get in the car.

Yes, it's life. And it's ok if we have days when we just can't deal with the stress that life throws at us.

And until we walk in anothers shoes, it's impossible to understand, how their MS has affected them.

Sheila
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1637739 tn?1371688706
MS is different to everyone and with that said, I believe everyone's ability to handle stress is different too.  We are all unique individuals.  What's important is that we do our best with what we are dealt and pray that each and every day holds new promises for us.  

It's great that you can handle stress JJ.......wish I was designed to never over react or be stressed.  It would be like hitting the lottery for me if so!   For the majority of us some things will just get to us and that's ok.....it's life right?  We will deal with it and hopefully overcome it!

Jeny
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