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!

[luvdogz55]

hi everyone.i really am out of questions at this point.all i can say is when this hit me like a ton of bricks april 2013,the medical and mental health communities have been rude,un~compassionate,cruel,and verbally abusive.i have been called names and accused of exaggerating my symptoms.one ms neuro ranted and raved at me.even the nurses and pts have been vile and verbally abusive.i feel like i've been in the twighlight zone. i have deteriorated drastically,the pain and and weakness are 24/7. have seen 4 idiot neuros so far and a slew of other so called professionals who have only made me WORSE.misdiagnosed,rediagnosed~~especially as to what stage i am in.i will be getting my last refills of klonopin and parafon fortes today,and i never want to see ANY drs,neuros,therapists,nurses,social workers,etc again. i have my OWN plan.my body,my life,my choice.i have always believed strongly in autonomy,and the right to die with dignity.this i say for ME,not for anyone else.it is about CHOICE. i may as well have gone to witch doctors or practiced voodoo the past year and a half. the lack of empathy from so many was appalling.well,no more~~i am free once again. they did do a health history,and i believe this all started when i was about 20,am 55 now. i always had weird neurological stuff going on but for the most part ignored it all because it went away,or wasn't that bad,or the dimwit doctors couldn't figure it out.finally had 4 mri's,lumbar puncture,evoked response eye test,20 blood tests,ultrasounds,x rays,ekg's. the 4 neuros still couldn't really decide,but diagnosed me with spms,ms,rrms,and last but not least,ppms. which,btw,if you work,all paid for with YOUR tax dollars.THESE people are the REAL welfare queens,lol. yes,i'm angry as hell.in constant pain,weak,rarely eat,although for some odd reason i can still walk with over 30 lesions all over my brain.or probably more now,been awhile since the last mri. all i can hope is that the rest of you have been treated kindly,professionally,and with empathy and compassion. those are the most important things in life,i would not want anyone to suffer like i have,ever. these dingdongs here really dropped the ball.don't get MS in michigan especially if you're poor.

[kwarendorf]

Hi LD -Welcome to the group.

This thread is a little old. It was last updated over 3 years ago. I didn't want you to think you were being ignored by folks who no longer visit :-)

Why not Post a Question and introduce yourself. We're a pretty friendly bunch :-)

Kyle

[luvdogz55]

jesus !! you sound like me !! myself though i can fly into an insane rage at the drop of a hat,so now i isolate.which of course isn't good,but better than going to jail.

[needanswers54]

And hugs to you, too.  Welcome!!!

[candy158]

Hi all, I am sitting hear LAUGHING, and I don't know why.  This is so me, that I think you guys somehow got into my body.  

I just had a huge fight with my hubby about this very thing.  He says that I say things and don't think them through.  I didn't know how to respond to him cause I don't know I am doing it.  Then I flipped off the handle and told him, " I am what I am, and if you don't like it, then".....

I didn't finish the statement, cause I started to laugh again, thinking this is so stupid.

I did not even know that this might be part of the MS, and I always just put it down to " oh, well, this is just CANDY now." ........... but, thank you all for your input, it also helps me put things into presprective.  I will get hubby to read this too.  

I also make my family walk on egg shells, and am dealing with some difficult stuff with a dauaghter in law from HELL, and I wonder if sometimes I blow things out or proportion.

I babble alot sometimes, about NOTHING apparently, or so my hubby says, and then he will add I will blurt out things that just enter my head and have nothing to do with the conversation that is happening at the time..... do you guys do that Too???

I  posted something on the forum, and have regretted it ever since.  I know that sometimes we have our own opinions, but this one I seemed to have offended some people, and that is the thing that i DON'T want to do,............. so, I think I have to think things through more, and try and not blurd....

Thanks again for posting this, it is very informative, and nice to know we are not alone,

*HUGS* to all,
Candy

[opie74]

How did i miss this?

[alyrik]

I know how you feel, my family gets so mad at me because my speech is just so fast , they say it is like a data burst , which at first was funny  now it is just plan annoying, and I am having rage issues on top of that .  
Thanks for the ear .
Michael  

[alyrik]

I know how you feel, my family gets so mad at me because my speech is just so fast , the say it is like a data burst , which at first was funny  now it is just plan annoying, and I am having rage issues on top of that .  
Thanks for the ear .
M.

[needanswers54]

Sorry, I missed your January thread.

Yes, I think we are on somewhat the same page.

My vision and the connections are slow today.

I have migraine starting.  

But, I am glad to have a chance to get to a computer.

Again, thanks to one and all for all your support.

Torey

[needanswers54]

Thanks for the feedback.  I am not saying that I was diagnosed with bipolar.

I just noticed that so many people on this sight have been diagnosed as bipolar and then have had their neuro state that it was NOT bipolar--but MS--and have had their records changed to reflect the situation.

The psychiatrist from New York that wrote the book is a specialist in bipolar.  He was the physician who stated that MS can mimic bipolar.  And that one should treat the MS rather than use psychotropic drugs for bipolar as the situations are different and the bipolar drugs is not what is required for the MS--even if the person appears manic.  

I do recognize that a person can be both; and I recognize that in a situation in which the person appears dangerous--that treatment options may change.

It just seems that once a bipolar label is struck--then the physicians consider the patients as being quack and get lazy about figuring out their MS diagnosis--or fail to consider the other things in their health and life that is going on.

Sometimes just the taunting and lack of validation for someone with a disease such as MS can trigger them to have a panic attack due to possible post-traumatic stress disorder or something--especially as MS patients tend to show more extreme mood swings.  I have just seen so much mistreatment of MS and lupus people, etc. that it just sickens me.  I had a nurse just this month tell me that the doctor was getting stressed out because they could not get my vomiting to stop after rounds of dilaudid, zofran, compazine, etc.  My blood sugar became very low and the trucal titubation that I am experiencing had become much worse.  The nurse said that the doctor thought my MS was relapsing.  I think that perhaps that was correct.  I was given high dose benzodiazopine to try and control the tremors.  Then, I was treated as if I was an anxiety case because I had to have benzo.  My neuro has stated that he has prescribed them for my tremors (after I asked for them) because of the tremors--not for anxiety.  The docs see that I have a prescription for valium and they just make assumptions.  It really ticks me off.  I have trouble with seizure medication.  My titubations get to the point that it appears that I am having a seizure--but I am not.  I have been tested during such an episode and at other times.  This has started since my transverse myelitis stated active for a good year in my cervical spinal cord.

If the most experienced ER doctor there was stressed out about my extreme vomiting, why is it that the patient cannot become the least bit stressed out about anything.  If  he was that stressed out and thought my MS was relapsing, why did he not do any MRIs or consider admitting me?  I ended up finding my own way home (with the options of walking or hitchiking) in about zero degree wind chill in the snow.  My blood sugar was about sixty about twelve hours before all the vomiting.  There was no IV with glucose or anything.  I just think that we are often just brushed aside and diagnosed psychiatric because they just do not know what to do with us or are just too lazy or too busy to try and figure it out.

My family has been emotionally abusive/invalidating to me since my diagnosis.  My own Mother basically stated that my life was a waste.  She stated that all my hard work and education was a waste.  And since I cannot do what she demands that I do which in the past I had struggled to do:  She refuses to have anything to do with anyone in the family who has anything to do with me.  I have become totally alienated.  All I need is for someone to state that I was psychiatric or bipolar and that would totally justify their abuse towards me.

The whole situation is sickening.  

I understand what you are saying.  I just think that there is more to the picture than a lot of clinicians have the time or the patience or the knowledge and expertise to really listen, understand, diagnose, or treat.

Well, that was me letting off my steam for this afternoon.

Thanks for your ear and responses.

Torey

[supermum_ms]

This, reading this stuff is what makes me love you guys, always makes me feel 'normal' though i dont know depression from internal personal experience, there isn't a family member that doesn't suffer from depression, i even married a man that does too. I seem to have been hit with the lucky stick on this one, i laugh way too much and its abnormal at what i find funny, so i think my brain is giving me a brake here.

My mum was dx with bipolar 40 years ago, back then it was called manic depression, if there is any polar going on in her brain its Uni, never has been up, she's only ever frightenly down or normal, truth be told i think her true problem is anxiety. I can only speculate but i think her issues are caused by something that has never been treated, she's got kidney issues and she's hypoglycemic too, so who knows the how or why. I find it interesting that she still has the same level of depression even on her meds, her anxiety issues can and do cripple her when they hit, you'd think if it was bipolar the meds would help just a little bit.

I do know something about hyper reflexes without having the anxiety issue, touch me now and i startle, i jump at unexpected sound, objects etc. I have unconfirmed (cause theres nothing wrong with me accept stress or maybe something vascular, eyes rolling at wolly Dr's lol) spasticity, how else can i walk like a string puppet, and i have a lot of over muscle rebounding, they are still moving long after they should be but i'd not thought they were all related. I did come across a dx MSer who also walks like a string puppet, dont know of anyone else that has though. I'm sure there's a book somewhere that discusses in detail why/how and what causes someone to suddenly start walking like vergil from thunderbirds, i'm just havent found it yet! lol

Gee its good finding somewhere where your normal is just that, quite normal :-) oh and next time your looking for a place to hang where you wont stand out or be rejected, pop over to my house, here anything goes, normal is so last season!

Cheers.........JJ

[LATW]

When my friends MS started to get really bad he used to rage and punch holes in the walls.

His MS has progressed to the point where he is total care.  He can not do anything for himself.

LA

[Quixotic1]

Torey, I read your other question about whether this is really bipolar or the chemistry changes of MS.  I'm not sure that I know the difference.  If MS has so changed your brain chemistry that you show the same signs as the people with bipolar, then why don't you have Bipolar Disease?  It's just that it might come and go with relapses.  The depression of MS appears identical to the depression which is occurs in people without MS.  It responds just as well to the meds.

Other symptoms of MS can be treated like their non-MS counterparts, like treating urinary incontinence with Vesicare.

I don't know enough about Bipoar disorder to say the same.  My point was that it looks the same from the outside.  The good neurologist/psychiatrist will do a work up when he sees the patient with new onset psychiatric disease.  You check the MRI, thyrid, B12, ANA - all those things that are known for showing up with this problem.  The psychiatrist you saw said "don't treat".  I don't know if not treating the symptoms is always feasible.  

Just don't miss the underlying disorder.

quix

[Ufrustrated2]

>>But, there is just too much medical negligence going on.  

    especially for people in the realm of this forum!

>>But, treating the organic neuro inflammation should be done--as that is probably causing some of the obvious symptoms.

i recently had my local neuro attempt to back peddle and discount this inflammation in my CSF as being the root of many of my symptoms. he mentioned behavorial, genetic and environmental!! how is that for negligence when tests show otherwise?

Q knows the story

[Quixotic1]

Hey, Hon, I don't think anybody here would disagree with you, least not me.  What I was commenting on (and I was the one who brought up Bipolar Mania) is that MS plays directly with the brain neurochemistry.  It does cause real depression, indistinguishable from other major depression.  It does cause a mild dementia.  It can change personalities.  The changes in mood that we started out discussing are caused by a short-circuited brain chemistry.  We appear nutzoid and we are not.

I was reassuring U2 that his emotional lability was directly a part of the disease.  I wasn't equating it to Bipolar Disorder.  I just mentioned that there were reports of MS beginning with a first episode of Bipolar mania (that was caused by the MS).

The fact that MS causes a huge range of neuropsychiatric pictures is not very well appreciated by the rank and file of neurologists.  For the most part a recent history of severe depression is seen as a reason to dismiss MS as the diagnosis.  What stupidity!  In reality, the real MS experts are urging doctors to view a major depressive episode as a relapse or attack of MS.  A severe depression should RAISE the suspicions of MS, not lower them.

Now, calling a patient's new set of symptoms a Manic episode was reported in the literature as a cautionary tale.  If a person has a psychiatric episode of some kind along with neurologic symptoms, the investigating doctor should include that piece of info and, if they have an MS-educated head at all, it should point them toward the correct diagnosis.  And if that episode persists, it SHOULD be treated as a manic episode, if it is disruptive to the patients life.  Very likely as the attack resolves the psychiatric episode will also.

If someone is disabled by severe depression from MS, should they not be treated?  People with MS have 7 times the suicide rate of the healthy population.  Treating this will not mask the disease.  Also, we don't have the luxury of treating the underlying inflammation.  We can try Solumedrol, but it has its own spychiatric side effects.

But, all this was not the topic we were discussing.  It was that MS legitimately changes the brain into condtions that people with other conditions, like depression or Bipolar disorder have.

I think you got tee'd off because of the suggestion that these altered states might be misdiagnosed as pure psychiatric stuff, the person would be wrongly pigeon-holed and sent on their unmerry way, missing the underlying MS.  This happens all the time and it's an outrage.  Thats why we always tell people that the depression, the confusion, the "whatever" may well be part of an underlying disease like MS.  that was the point of this thread.

I think you and I are saying the same thing, no?

Quix

[needanswers54]

Thanks for all the responses.

I just am not getting what is all being said about bipolar, anxiety, MS, etc.

There are 78 causes of mania.  Mania can even be an aura of migraine or a result of the migraine medication.

My point that I was trying to make is that both bipolar and MS can occur concurrently.  But, so many doctors are just seeing mania or extreme anxiety and the MS shakes, etc. and are figuring "CRAZY" and giving a bipolar tag without any testing, etc.

I agree with Quix that it is brain chemistry.  But, if someone has inflammation that is affecting the electrical chemistry and thus causing other organic symptoms:  then, giving psychotropics is just masking the problem.  In fact, it could possibly be causing a counter-balance when the swelling goes down and the system could otherwise be somewhat back to normal.  Now, it has to readjust to the adjustment, possibly.  I mean, I have yet to see these chemicals being analyzed in most people before or after the med.  It would seem to me to check for MS and other diseases as well instead of just treating with psycho meds and counseling and sending people home.  I realize the need for immediate help in a situation.  But, there is just too much medical negligence going on.  I realize that MS can be difficult to diagnose.  But, treating the organic neuroinflammation should be done--as that is probably causing some of the obvious symptoms.  Then, go from there.  

It is like trying to start the car in the middle of an oil change.  The oil indicator light says low and the car will not start.  So, you put in oil and try to drive away.  The oil will run out if the filter, etc. has not been reinstalled.  The car seems better, at first.  But, in the long run more damage can occur.  The same in our case.  Instead of going to the root of the MS problem with a diagnosis, we are allowed to deteriorate further.  If the car owner puts the oil filter, etc. back in place before adding the oil, things will work better and the oil light should not light and future immediate damage is avoided.

Simply diagnosing bipolar or GAD, etc. and giving meds is simply "masking" the problem as was just putting oil in the car.  Not only has there been misdiagnosis, the brain chemistry has now been messed with by the Doc, and the correct diagnosis delayed.  Not to mention the fact that this adds further lack of crfedibility and validation to the patient and his/her symptoms.  This causes more stress and anxiety and further exascerbates the problems.  At least that is what I think.  Maybe others do not see it this way.  I am tired of seeing so many people mislabelled and mistreated when they have an actual autoimmune disease that requires treatment.  It just sickens me.

Sorry, if I sound tee'd off.  But, I am.  I really am.

Till later,

Torey

[Qrtrmoon]

Oh you all have made me feel so much better today!!  I just got married to a wonderful patient man but he is new to the world of MS and bless his heart he just doesn't understand sometimes and I am afraid after having lived with it for 10+ years and all my friends and family already having figured me out, I don't always realize that he doesn't just KNOW what is going on with me.  Sometimes I snap without realizing what I am doing  and I know there are days he has to just think he has gotten with a "bi_ _h"  I am going to drag him in here and make him read all this and maybe he will understand better!  I'm not mean I am just haywire!  And I especially love the part about seeing the mouse in the corner of your eye I thought I was the only one that did that,  have to go look for that thread! I even mentioned that to a neuro once and he acted like he didn't have a clue what I was talking about so I never brought it up to anyone again.  I HATE THAT!  

[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

[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

[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!

[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

[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

[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

[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