rage and moodiness so common for us ms folks

[Ufrustrated2]

why is irritability, rage and moodiness so common for us ms folks. or should i say me. i have a lot of chronic pain syndroms so i know that adds to the irritability, lack of consistent deep spleep adds to it too.

ok, so i know these things. what baffles me is the sinusoidal waves of, "ok, i feel great today, week...", then "oh oh, here we go again".  this roller coaster of never knowing or not really being able to control it for consistency sake drives me nuts.


Happy New Year!

[Quixotic1]

You're right.  Pain, fatigue and feeling lousy will make a saint irritable, but there is more at work in MS.  We have a particular problem with something called "emotional lability".  this means we may have problems with quickly snapping between emotions.  Because the emotions change so fast and are often way out of proportion to what we are reacting to, we can't control them.

I have my poor sister walking on eggshells sometimes, because she'll make a comment (either being funny or that I just take wrong) and the next thing we know I am yelling and sobbing and feeling really attacked.  

what?

Some of it falls under the name of "pseudobulbar effect" and can be a hallmark of MS.  One of our earliest members was in the ER one night with sudden near-paralysis of her legs.  The were trying to get her to walk and she was laughing hysterically about it.  Once the ER doc found that she wasn't high, he took her husband aside and told him they needed to look at her for MS.

We have a Health Page on it

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Emotions-and-MS/show/753?cid=36

Man, it can really set those around you back on their heels.  I try to get a grip on myself and apologize, but sometimes it is difficult to break the emotion.  when I am in it, I can't always see that it is inappropriate.

Quix

[Ufrustrated2]

i'll be darn. i can really grab on to that explanation and i'll be sure to print out the health page.

i can't either, tht is the "see that it is inappropriate".  man oh man, no one ever helped me put this particular puzzle piece in such a clear spot. but this explains so much, whereas before, other explanations just didn't fit the shoe. and i have wrestled with this aspect for 23+ years. i don't want to be angry about [that], but i do ebb & flow with it every other day now.

i now feel like i have a whole other journey to work/walk just with this aspect now that we know what i have.

speaking of saints, you sure keep a lot of us more balnced!
thanks, really thanks.

[Lulu54]

And if I may, let me add one more piece to this -----

you have been so jer ked around by the medical system, I would think the seeds of anger would incubate and grow into something full-fledged. I would be a raging lunatic if I had faced 23+ years of mistreatment and medical neglect.

having Q's explanation truly does put a lot into perspective.....

good luck here in 2010.

as always,
L

[Ufrustrated2]

yes, i think of that in that way often. and that in itself consumes wasted energy better put to something more fun. fortunately i still have some discipline left but i think it is my circle of friends that help with that more so than i.

you are correct in what you say. LOL

thank goodness we have this forum together, your thoughts and help mena a great deal Lulu.

Best of 2010 to you also,
thanks

[meg321]

I  just bought a book called  "MS and  Your Feelings'..handling the ups and downs of MS.

I havent read a lot of it because i have a hard time reading right now.. the carteract surgery will help.

Anyway, it looks very interesting..anyone else read it?

hugs, meg

[Ufrustrated2]

hi meg, let us know know if the book is worth getting. i'll go pick one up. over the years my reading skills have slowed. sometimes it takes the longest time to read a page, then i doze off in a  semi-sleep. got to force myself to read books these days. i can remember when reading books wasn't so difficult.

[meg321]

Yes, i do too..other than not seeing as well, I forget what I am reading if I put it dow fr any length of time.  If I could just get far enough into the book i might not forget so fast..

meg

[charmed6418]

I get irritable as well with one week I'm fine and the next week I'm simply miserable. I hate having to submiss to this disease but we have to. I'm mainly fatigue, sleepy and numb all over or just feeling like a live wire. Its hard to plan and deal with everyday life but we just have to press on and just do it. I've always been moody, irritable and fatigued since i was a child so maybe MS has been lying dormant in my body??? It has crossed my mind why I had been this way for so long and it increased as I got older, then I got diagnosed March 08. Hmmm......

[needanswers54]

I have been going to an MS support group.  So many of them were diagnosed bipolar before their MS diagnosis because of their mood swings or the intensity of their moods.  This is particularly true of the ones diagnosed with severe migraines and MS, etc.

I had read a book from a famous New York psychiatrist that states that noone should be diagnosed as bipolar unless first tested for three other diseases of which MS was one.  He said that treating those mood swings is different from treating bipolar disorder.

I wish I could remember his name or that of the book.

It seems that so many people on this web site have been diagnosed with bipolar incorrectly before being diagnosed with MS.

I realize that they can occur simultaeously in a person.  How they can necessarily tell the difference, I would love to know.

This has been a real hardship for some people that I know.  They had been treated as psychotics in the past and therefore their true diagnosis was hindered.  And their reputation has been tarnished; and they are treated very poorly at some of the hospitals.  It is such a shame.

I hope not too manyt of you are going through something like this.  Any comments?

Best of luck and happy new year to all.

Torey

[Ufrustrated2]

hey Charmed,

>>I'm mainly fatigue, sleepy and numb all over or just feeling like a live wire. Its hard to plan and deal with everyday life but we just have to press on and just do it.

how i can relate/empathize with that. to "force" we had to use somedays just to [do something], it is so weird to me. in one sense, i know now what/why this is so i'm not laying the "i'm just a headcase nutjob guy, so excuse me" trip on myself, but some days/weeks it is like a ton of bricks on my soul and nervous system.

good to hear your thoughts

[Ufrustrated2]

>> So many of them were diagnosed bipolar before their MS diagnosis because of their mood swings or the intensity of their moods.  This is particularly true of the ones diagnosed with severe migraines and MS, etc.

this issue has caused a lot of mental anguish for me. that is me thinking and being let to believe i was a headcase. i mean no disrespect to others with bipolar so please...
here are the things the VA diagnosed me with a few years after i was out of the mil

schzophrenic
bi-polar
depressed
cyclothymic disorder

i agree with the depression. that was part of my medical discharge, depression secondary to chronic pain syndrome due to back injury. they also knew my CSF was pos for o-bands but never acted on it. i don't recall any tests or any such thing given to quantify such diagnosis except for the depression due to pain.

so, for years, i go see a doctor at a VA and what does he/she see on the chart staring them in the face?  "here is a crazy vet talking about a myriad of symptoms, sorry kid i think you need to see a shrink, next"

g@##!mn you have no idea how that has raged in my head over the years and/or helped me to be sheepish at times around the doctors there following their suggestions for the "head case".  how much g@##!mn time of my life have i wasted on this cr@p?  i'm not feeling sorry for myself either. don't care about such attitudes. what i am is pi$$ed off. i'll get over it - someday.

reputation you say? my own family treated me differently due it. i treated myself differently thus others treated me differently. just writing this i can feel the nuclear rage inside. just the cards i was dealt so i deal with it, go to my support groups and move on. but i do ask myself, would anything be different if that had not had happened?

>>They had been treated as psychotics in the past and therefore their true diagnosis was hindered.  And their reputation has been tarnished; and they are treated very poorly at some of the hospitals.

that is exactly what happened. and i'm not alone and that is truly sad

we now know most of my symptoms are from RRMS.  

if you remember the name of the book let me know, i have a few doctors i want to get copies for.

[Lulu54]

here's an interesting discussion on MS and bipolar  - we'll see if it makes it through the screening here - remove the extra spaces of course.  face book  .com/topic.php?uid=2222988343&topic=13361


If you google ms and bipolar you will come up with multiple hits on this topic too.

be well,
Lulu

[Ufrustrated2]

wouldn't be complete to omit this tidbit:

oops, forgot to add, they also listed i had psycho-tendencies. i must have been there on a bad ms day. LOL

is it any wonder folks like us that fall through the cracks into this cauldron take so long to get correctly diagnosed and by the time we do, it's like. we're in the fourth quarter and this game is almost over. like, thanks for the timely medical care doctor

[Quixotic1]

Somewhere recently I mentioned that in my beloved "Handbook..." it mentions that first episode of Bipolar Mania has been documented as the expression of a relapse of MS.

This is all brain chemistry, folks.  Then, many of us have been wrenched around by the medical profession - thinking specifically of you, U2 - to add our own particular aspect of rage, self-doubt, frustration, and sense of futility.

U2 - the latest addition I wrote to the D.U.M.B. thread, I thought of you and the VA.

Quix

[Mike_Shuswap]

My wife has mentioned my being quick to fly off the handle sometimes these days.

I wonder if jumpiness can be attributed to whatever demyelinating disease I have? I can be startled soooo easily since this all started 10 months ago! If I open a door and my wife happens to be standing there I jump out of my skin! Sometimes she'll do it on purpose.....very funny... Anyway, I get jumpy in the car too. If I see something out of the corner of my eye I have an instant of almost panic. Weird huh? I'm sure this is a symptom of the rocks in my head.

BOO!  Mike, LL

[Ufrustrated2]

>I thought of you and the VA.

we vets salute you!!

[Quixotic1]

It's not uncommon to have a hyperactive startle response in MS.  It can happen from a couple of causes.  One, plain old anxiety can cause.  Your mentioning of feeling like you start to panic made me think of this.  Do you feel anxious?  Worried, pressured thoughts, difficulty sleeping, relaxing?

Certain meds can have this effect also.

The other thing is having hyperactive reflexes and/or spasticity.  Being spastic can certainly make you physically jumpy not related to anxiety.

Be glad the rocks in your head keeps your feet on the ground so you don't take off the next time you are startled.

BTW - we have had whole threads on "seeing the little mouse in the corner of the vision."  It's a real common phenomenon in MS.  Welcome to the party!

Quix

[needanswers54]

Thanks for the info.  So, are you saying that this brain chemistry means it probably is bipolar?  Or could the inflammation and lesions be diverting the impulses cauing a myriad of symptoms like when a wire in the electrical box is stripped or a computer is on the glitch.  Restart it or defrag it and it is fine.

That psychiatrist said that the bipolar synmptoms were NOT necessarily bipolar, but, rather MS; and that, therefore, that the usual bipolar drugs to balance the dopamine/seratonin, etc. were not the answer as that was not the problem.  It is the electrical short-circuiting, I think.

I know I will be trying to say things and they will not come out.  And, then for me, they may come spilling out really fast or I cannot remember them to say everything that I want to say.  I guess that is as best as I can describe it for others and maybe myself at this time, for one of their problems.

I am feeling  so defeated and getting full of self-doubt and scared at this point.

I am starting to get treated very poorly, myself, over some of this.

I may expound later.  But, I know any form of mental disease would not be acceptable in my family.  But, they are already laughing at my problems and disowning me.  It was so hard to have noone for Christmas.  And I do not have a way to get around.  I will try to tell more later.   I am sure we have all had our hardships.

It is just that I have been assaulted recently and keep getting robbed at my house, somehow.  Yet, noone will believe me or investigate.  And I even had two jimmied locks and a broken window and handprints this past year.  Someone was in my house while I was in bed on Dec. 23.  I could not get to the phone.  Noone will investigate or believe me.  It is so frustrating!!!!

My neuro tells me that as long as I know that I am having verbalization and memory problems, etc., that I am not crazy.  That it is MS.  That others cannot, will not, or just refuse to understand.  Even families will not care.  He is such a kind doctor.  I feel so lucky to have him.

Thanks for the ear.

Torey

[Eyesnlegs]

I have read the book 'MS and your feelings' it's by Allison Shadday and it is excellent. I worked through a few of the exercises with my other half and was surprised at some of the things we discovered about each other and the way we felt about our new permanent lodger.

I would highly reccomend it, it is not too expensive on Amazon.

Meg try to find some time to get into it as it is well worth it.

Much of the last section is relevant in the US and not the UK but all the same it is a fixture on my bookshelf now as one of my 'tools' to deal with issues relating to MS and of course because although I often read books as quickly as I ever did I do so easily forget all I have read these days -  lol.

Pat x

[Eyesnlegs]

forgot to say one of the chapters is called 'Sick and tired of being sick and tired' now can't we all relate to that - lol

[Mike_Shuswap]

'Hyperactive startle response'. I like the sound of that. next time my wife scares the h**l out of me, I'll tell her that's what I've got. LOL
Yes, I do have some anxieties and am somewhat worried about a couple things, like will I be able to return to work soon, and will someone please diagnose what I have!
I don't have any sleep problems other than getting up 3 to 8 times at night to use the washroom. No problems relaxing, I fall asleep everyday in my easy chair.
My reflexes are normal.
Some party...LOL

Mike, limbo lander

[jodi40]

so glad i stumbled (haha) on to this site....i feel normal now...thanks to u all!!!
Have u noticed the doc always ask "hows your mood?" grrrr...if you would give me some answers I would be in a wonderful mood! lol

The lack of sleep is driving me "crazy" for sure....and i am irritable...because of it!

[Quixotic1]

Mike - Heyyyy!  We put on a good party!  Don't dis' us, man!  We're all lurching, and stumbling to the music trying to avoid the scurrying mice, ranting about our terrible doctors.  It's a good time!

Jodi - Welcome!  I gather you don't have a diagnosis.  Why don't you start of new Discussion and tell us your story.

Quix

[Mike_Shuswap]

You're a funny lady Quix! I ain't dis'en ya. ma'm//lady..(not sure how to be cool here) Would love to lurch and stumble with ya, maybe even a slow dance to the tinnitus blues. "Lurchin'..and Stumblin'..& Groovin" to the Music" It is a good time...at least in here, thanks to people like you who make the effort.

Thank you my dear, thank you...you're a lot of fun...& smart too!  PARTY ON!!!!

Mike