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 (syndromes) 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.
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.
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.
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.
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.
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.....
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.
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.
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......
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?
>>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.
>> 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
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.
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
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.
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.
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!
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.
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.
'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.
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!
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!!!!
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!
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.
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.
>>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?
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.
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!
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.
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 .
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 .
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,
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