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645390 tn?1338555377

Personality change possible during a flare up?

HI all, (again),
I have a question. I have not been well for about 2-3 weeks, have an appt with my neuro next week and in the middle of trying to find a doc for a 2nd opinion. People have been asking me if I am OK lately. I had surgery 6 weeks ago for 2 herniated discs in my cervical spine, and life has been upside down for quite awhile now. BUT, here is the thing, tonight 2 friends of mine called my husband to ask him how I was doing. They are concerned, and think I am not myself. He told me, I became angry, although I understand they are caring friends. I feel like I am going crazy. I have no patience, very short tempered, and "forgetting" so many things. (What day of the week it is, forgetting to pack lunches for my youngest children for school, trying to call my husband back @ work and not knowing the number. He has been at the same job with the same # for +10 years, I got lost coming home the other day...the list goes on). Is it possible if I am in the middle of a MS flair that my brain or personality changes?! I feel like I am entering some type of twilight zone here. Having trouble keeping up with my life. Trying to get a sense of normalcy but to no avail. I have 4 young boys and it is not good when I cant get off the couch and me the mom I am supposed to be. My legs feel like they are in quicksand and I am so FATIGUED...have never felt this tired in my life.

Thanks for listening, guess I am rambling a bit, just don't know what to do. My husband just let, said he needed to get away for awhile, it is 10:15 in the evening. I think I am driving him crazy without even realizing I am doing it.

Thanks, Michelle
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645390 tn?1338555377
I am sorry to hear about your husband leaving, and all that you have been dealing with. I am glad to hear your husband went to the doctor with you, that is a positive part, and perhaps you will be stronger as a couple in the end? I hope so anyway. It is quite a blow to be a runner, busy mom, working and then bam, life happens and hits you in the face. Going to take some time to adjust to it all.

-----"I am surprised that with one lesion and 2 bouts of ON that they dont dx MS and at least start you on some drugs to at least help with your fatiuge can you call your GP about this?"------

I spoke with the nurse @ the MS center yesterday. She wanted me to go get a urinalysis and would call me and let me know what to do. I am seeing neuro next tuesday. The nurse called today and said they would start a steroid today to improve my symptoms, but to call my surgeon and get the OK on that. The surgeon said NO, too soon after surgery...so I will just wait until next week and hopefully get some answers then. My GP feels I do have MS,but he feels a specialist is needed, and wants a neuro to diagnose and treat it.

Been a tough day today, husband and one of my kids woke up sick. So, now I had 5 boys to care for. Went to the pediatrician and it is strep. At least that is easy to treat with antibiotics, and hopefully this will not travel to any other family members. Although chances are good, tomorrow I might be back at the pediatrician again...One day at a time, is the mantra I keep telling myself. I am trying to stay positive and just do the best I can for now.
Thanks,
Michelle
Helpful - 0
230948 tn?1235844329
uk2
michelle

I so feel for you my husband could not cope with my illnessat all and walked out back in august, we have since talked alot and our closer but he still does not understand the emotional effect of the illness has on me and the factnoone can slow this down or even tell me what it is its been 2 yrs and i've ended up being registered disabled from a healthy active working mum who jogged on her days off up to 5 miles and worked a 30-40 hr week with small children and then bang my life changed in Jan 2007 and by May 2007i was no longer working.

He came to my neuro appointment yesterday and just didnt understand how frustrated i am that noone could tell me this is not going to end i said at least with cancer you die and go to heaven!! this i have to live with the rest of my life not knowing what the furture holds from the morn to the night. But i do have a quailty of life it is just different from before and for the sake of my 3 children i have to learn to live with it so they can live with it, so i carrie on and keep smiling.

I love this site as you can be totally honest on here knowing that everybody totally gets you.

try to understand that your husband cant ever understand how you feel but also dont keep it all inside share it with us and also maybe try to share it with him and get him to understand that you are tried and its not just a tired he would understand and explain the quicksand feeling you feel and say you need help at the moment after all you have just had major surgery as well which can cause fatiuge like yours.

I am surprised that with one lession and 2 bouts of ON that they dont dx MS and at least start you on some drugs to at least help with your fatiuge can you call your GP about this?

take care always here if you need to talk.

sam
Helpful - 0
645390 tn?1338555377
OK, got the message. No more hot showers for me. Just needing some sleep. It is 3:30 in the morning and I am too tired to sleep? Perhaps I napped too much during the day, so here I sit, reading everything and trying to learn. What books have you written Quix?
Thanks again,Michelle
Helpful - 0
147426 tn?1317265632
STOP TAKING HOT SHOWERS!!! :))  to quote my neuro and the tone he used.
Helpful - 0
645390 tn?1338555377
Thanks for all the explanations. I understand much more than I did before. I didn't get up to the lab today for the urinalysis, I will do tomorrow. I just physically couldn't do it today. Both my legs are so weak, it has been a really tough go this time around. I am trying to give myself a break and just allow things to be. I am a pretty efficient person, with generally bunches of energy to get all I need to get done. I am supposed to go back to work this weekend, and am praying that I will feel better my then. My job is pretty physically demanding, I work in a doctors office with patients, and I am always "running" or so it seems. I am worried about that, but at the same time and trying to be ok with just doing my best and seeing how it goes.

I do recall reading a bit about heat and exercise here in the past, and you brought it too my attention Quix. I have been taking HOT showers every morning, for my neck, and perhaps I need to stop that immediately. I have noticed so much fatigue in the mornings, and think it might have to do with the shower. After I get out and get dressed, I am "done" for the day for the last couple weeks. Maybe I will shower tonight and hope tomorrow can be better. I have about 4 things I need to do in the morning, all used to be"small" in my mind, but now "huge" in my mind. Get to the preschool, take the dog to the groomer, get blood work done, urinalysis and meet with a caterer. This is all between 9-12. Wow, just typing that already has me exhausted. Well, I can only do what I can do, and hope my body will cooperate.

I am taking the advice here, to give myself a break and just let it be. (that could be a song, u think?) I already feel a bit better mentally, from all of you and your support. I thank you all again...Love,Michelle
Helpful - 0
147426 tn?1317265632
Third thought.  Are you taking hot showers?  Has anyone talked to you about heat, exercise and hot showers?
Helpful - 0
147426 tn?1317265632
Oh, the explanation above is just to explain why the request for a urinalysis.  I also agree that the infection you know about is the most likely cause.

I thought of another spouse reaction that we have heard multiple times.

Many times a spouse feels cheated from the life (s)he thought you would have together.  The might say, "I never bargained for this to happen."  The answer, of course, is. "Neither did I."  But all of these varied emotions play through a relationship that seems to have suddenly become one sided.

I so agree with Shell when she urges you to first stop beating yourself up.  First accept that you are not right now the woman you always thought that you would be.  That may be easier to say than do.  It would VERY hard for me to accept that I had lost what defined me.

Remember we are here to help you - all the way.  We are all so glad that we helped your frame of mind right now.

Quix
Helpful - 0
147426 tn?1317265632
It is actually an unofficial protocol to request a urinalysis and often a CBC when it seems like a patient is having a relapse.  A hidden UTI is the most common infective stimulus for a new exacerbation.  Many UTIs happen without any appreciable symptoms.  This is echoed in most of my books.

My neuro has standing orders for me and the lab that I am to have a UA at the first signs of a relapse.  

This is something all people with MS should be aware of.  

Quix
Helpful - 0
338416 tn?1420045702
>  but she said many times patients with MS has asymptomatic symptoms of a bladder infection and that could set off a flare

Most definitely - although personally I think it's the bronchitis and sinusitis, like you said.  Unless you're experiencing odd odors and painful abdomen, that is...  But maybe you can get the nurse to prescribe a short bout of oral steroids, which should help you get over this flare.

>  A member here was taken to the ER when she suddenly couldn't walk.  In the ER she was laughing hysterically over the fact that her legs weouldn't work.  After verifying that she wasn't high, the doctor took her husband aside and told him she needed to be checked for MS.

Hah!  Did I ever tell ya'll I woke up one night and my right foot was cramping uncontrollably?  My right toe kept pointing up - it was like it was trying to pull back toward my shin.  I kept laughing, I guess because it was either that or cry.  But it was certainly an inappropriate response to the situation.

I've noticed other personality changes.  I try to remain cheerful and upbeat, but I get really angry at the simplest stuff.  Some days it doesn't bother me, other days it does.  Guess it's all part of the disease.  I just wish I had a warning light that would click on when I wasn't feeling good, so other people would know to stay away!
Helpful - 0
645390 tn?1338555377
Wow, THANK you SO MUCH for your words. Quix, I read that "What I want my family and friends to know". It was UNBELIEVABLE. Said EXACTLY what I am feeling. I am going to have my husband read it tonight (maybe), depends on how the night goes. This is really frustrating, but it really helps to know I am not alone. All the words here are truly so helpful, suportive and enlightening.  QUIX, you are a truly a life saver. I do think I need some type of mental health help, the anger and sadness I am having is beyond my usual experiences. I had one experience with PostPartum Depression, and was put on antidepressants for awhile. perhaps I need to look into that again. Maybe my PCP or the neuro could do that? I cant bring myself to find yet another doc, psychiatrist at the moment.

My appt with the Neuro was this Wednesday, but they just called to cancel the appt due to the doctor had to go out of town. I asked to speak with the nurse, she called me back. I spent about 1/2 hour on the phone with her, she looked through my chart and saw I had similiar symptoms in the past. She said she cant diagnose me, but thinks I really need to see the neuro again, and not wait too much longer. I was rescheduled for next Tuesday. She wants me to go today to the lab to have a urinalysis, ( I don't understand this...but she said many times patients with MS has asymptomatic symptoms of a bladder infection and that could set off a flare). She also said having recent surgery, but more likely was the bout of bronchitis and sinusitis, that set off a flare. She wants to ask another doc who is in the office today if I could have a steroid, either pill or IV, and feels that might help. However, she said being only diagnosed with "at risk" for MS, she doesn't think another doc will do that for me, and I need to wait to see my doc next week.

So that is it at the moment, I am going to lay down for a short bit before I set off to the lab. Does this all make sense? I feel like it is a waste of time to go drive 30 minutes for a urinalysis...but I am willing to do whatever might help me feel better. The fatigue is just awful today. I took a shower and got dressed and that was it. Had to lie on the couch with my youngest and wait for his bus to come pick him up. Thank goodness for the bus.

Thanks again from the bottom of my heart to all of you,
Michelle
Helpful - 0
198419 tn?1360242356
Hey Girl,

My gosh, Quix, this is unbelievable informative.  Thanks Michelle for bringing this up, it's very important that we discuss it w/those who we can.

I totally understand. I too believe it's more going on than a communicating issue.  I go  through this too, like many of us do, and can relate to knowing what needs to be done, and the things you mess up, or just forget to do, etc... It's horribly frustrating and makes you feel like less of a wife, less of a mother, and less of a friend to those who have been w/you for a long time.

Best thing you can do for yourself and others right now is to acknowledge it to yourself 1st so you can knock down the expectations of yourself for a little while. This way, when and if improvement comes along, you can feel it, and feel good about yourself again.

It may take a while, but in the meantime, those around you need to have your back a bit.  They should not completely take over and make you feel like you can't do anything. Just have your back.

They need to understand that you "have" to work at a slower pace so you can "think" and remember, and "do" at a speed your mind and body can handle.

If you can at least get them to that point, I think you will feel a little better.  Having more time to do things means more time to remember.

This is very, very important for all.  I'm so glad you brought this up.  I pray you can find a way to work it out.  I'm still not good at it, because folks don't "get it" in my house, but it's been worse so I'm grateful for small improvements.

ttys,
Shell
Helpful - 0
147426 tn?1317265632
My heart goes out to you for all of this, because I think it is far more than a couple not getting through a tough time together.

First, Michelle, you  know that I consider you to be more than just at risk for MS.  With two distinct attacks (2 bouts of ON) and neuro exam abnormalities you likely qualify for a diagnosis right there.  With an MRI lesion that puts you at about a 90% chance of having MS.  I think your search for a second opinion is crucial, because MS is very likely your diagnosis.  I may very well be wrong, but that is the way I read this.

So the rest of my discussion will be in the context of MS.

MS affects the emotions directly and indirectly.  Emotional and other psychiatric changes are a part of the disease itself.  Depression especially can be caused by the gray matter damage that occurs throughout the disease.  Depression is more common in MS than in other diseases that are more severe and terminal Ilike ALS).  Suicide is 7 times more common in MS than in the healthy population.

There is such a strong recognition that depression is such a common part of MS that if a person has had an episode of Major Depression within two years of diagnosis, that episode is considered by many experts to have been an MS attack/relapse.

MS or any other chronic life-changing illness can cause depression as a secondary symptom just by being such a major stressor.  In addition, the pain and fatigue of MS also can cause depressive symptoms.

There are many manifestations of depression.  A couple that many people don't know about are anger and irritability.  Anger is one of the major coping mechanisms of depression.  The mind uses anger to move forward.  Anger is outward directed.  It can keep us going, but eventually it does us harm by being a poor solution to the depression.  Irritability is another sign that the basic emotions of a person are not stable.  Little things upset us.

Back to MS.  A classic symptom of MS recognized a century ago is emotional lability.  People with MS seem to swing rapidly into the extremes of emotions.  One might laugh hysterically at a situation that isn't really funny or cry uncontrollably at the slightest bump in the road.  A member here was taken to the ER when she suddenly couldn't walk.  In the ER she was laughing hysterically over the fact that her legs weouldn't work.  After verifying that she wasn't high, the doctor took her husband aside and told him she needed to be checked for MS.

Recently I was reading about other psychiatric presentations of MS.  One is the sudden appearance of bipolar mania.  Other cases have occurred of actual psychosis or delusional states.  Every reference book I have read cautions doctors to be aware that MS may wear a mental health mask.

I say all of this because your family and friends are noticing that you are not yourself.  This may be far more true than anyone realizes.  It is not just being post-op from a huge operation.  It is not just fatigue.

Then we get down to the whole issue of your husband sort of appearing to have decided that you time to be ill is up.  Now, lets shake all of this off and get on with our lives.  It is hard, because no one has actually told him how likely it is that you have MS.  And,, if they have, he does not "get" what this may mean.  He may not realize that something is happening to you that may not get better.

Part of that may be that he doesn't want to believe that anything really bad could happen to his life partner.  It may be denial.  It may be grief.  Maybe if he gets mad at it and tells it to shape up it will go away.  We all have irrational magical thinking like that at times.

Men are taught in our culture to fix things, not to think about them.  What is happening to you doesn't look very fixable.  Maybe his anger is his way of trying.  Maybe he is angry at himself that he can't fix it.  There are a whole number of possibilities here for what is going on.

Some of the things will disappear with a diagnosis.  Your sudden increase in fatigue and weakness more than a month post-op sounds suspiciously like a relapse.  Perhaps you need to confront your doctor directly about how many of these attacks you need to turn the corner into an acknowledgment that MS is so likely that you should be on a DMD.  the criteria for treating a CIS allows less evidence than you already have to qualify for a med.

We have had many talks here about the strain that this disease (and others like it) out on a marriage.  The occasional outcome is that the spouse cannot handle it and leaves.  I believe the best chance of avoiding this is to help you husband see what it really happening with you earlier than later.  Your husband does need to hear all of this from someone else than you.  I totally agree that he needs to start coming along to doctors' visits.  I agree that counseling could be very helpful, but it should be with a counselor who is experienced in dealing with couple in whom one has a chronic illness.  These might be found via the local MS Society or through your local hospital - like support group leaders.

You might get neuropsych testing that would show how well you are functioning cogntively, including any depression.

Also, you might ask to be evaluated for depression and ask for some help there.  A great number of us are on antidepressants - either short term or long term.

The answer to your question about a possible personality change during a flare up---- Absolutely YES, it is not only possible, but it happens all the time.  It is built into the disease of multiple sclerosis.  


There is a Health Page called "What I want My Family and Friends to Know".  It is good reading.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/What-I-want-my-family-and--friends-to-know/show/357?cid=36

This is such an important topic.  I hope a lot of people jump in.

Quix
Helpful - 0
645390 tn?1338555377
Thank you all for your comments. I told my husband tonight that we need a counselor to talk to each other. I think it is a good idea Meg had, to take him to the doctor with me when I go this week, so he can hear it from someone else that I don't feel good. He is just not a very empathetic person, and fortunately I haven't needed much help in the way of a medical problem until this year. I need more than he is willing to give me right now, so something is going to have to change, and I don't quite have the strength to handle it at the moment. Or perhaps I do, I don't know...I have always been a fairly strong person, but always felt fairly good, so I am going to have to get the strength from somewhere. I do feel just a bit better today, although my gait is really bad today. I am so limpy, went to the park with the family, and couldn't make it to the playground. I had to turn around and get back to the car to sit and wait for them. ...but I do think I am improving in some ways. Some of the numbness is gone, and I feel a bit more energetic, so I am hopeful these are good signs...

Thats it for now, but thanks for listening,
Michelle
Helpful - 0
620048 tn?1358018235
My hrart really goes out to you, I have been diagnosed but not til recently and I have no small kids at home. I have no idea how I would be able to do that, i have a hard time now.

My husband finally started understanding when he went to the Dr, with me.  But i can be a real B****H sometimes  and usually he just lets me get over it.  Because when he is human and comes back at me it just gets worse.

I think it would be very difficult if I were in your shoes.  I pray it gets easier, one thing I have finally found is that if I try to pace myself, i don't get into a lot of trouble.

take care of yourself....

meg
Helpful - 0
572651 tn?1530999357
Michelle,
I am so glad you have vented some of this , but honestly it sounds like you and your husband need to have a good air clearing conversation about you being sick.  

I would like to tell you what I think of someone who wants to push you to get over it, while leaving you with the kids to take self-indulgent naps, but I won't.  

this has absolutely nothing to do with being grateful for what you have .....you can be grateful but still sick and exhausted.


The fatigue of MS, and even just the fatigue of chasing a diagnosis, is exhausting and impossible to understand unless you are in our bodies.  

Can you get your husband to consider counseling so you can work through these differences now before it gets worse?  

my best,
Lulu
Helpful - 0
645390 tn?1338555377
Thank you both for your comments. I have been diagnosed "at risk" for MS, due to 2 bouts of optic neuritis and 1 lesion on my brain. Plus the abnormal neuro exam and my symptoms. I tried to talk to my husband this morning about what is going on with me, the fatigue, weakness..etc. He doesn't want to hear it, feels I have been "rested" enough since my surgery 6 weeks ago, and I need to be grateful for everything I have,be happy , get out and exercise and get back to work. Well, he doesn't get it, don't think he will, i am in a very bad place right now. I have tried VERY hard today to get myself together. I am just too tired...he had a 3 hour nap today while I took care of the kids, and he just wants me to "get over it" already and get back to my "old self". My kids are 5-12, so at least they are not babies anymore, but it is still lots of work. The kids are upset, I am upset and now I feel lots of anger towards my husband. The medical bills are coming in, income is down and just not knowing what direction to turn to. I feel so lost and in uncharted territory. Although I have been feeling like this off and on since July 08. Just seems to keep coming and going, and this time it feels endless. ( the fatigue, leg weakness, lightheadness, numb buttocks, numb lips, parts of face numb etc)

Thanks for listening, just needed to vent. I am scared and feel like a huge disappointment to my husband, kids and myself. This is not me...
Michelle
Helpful - 0
Avatar universal
I too often feel the same you do... My husband doesn't want to believe theirs anything wrong with me. I haven't been sharing my symptoms with him for the past 6 mos but I have decided to inform him how I'm feeling during the flare-ups because I'm not myself and I have nothing to explain why I'm that way at this time. I don't  have a dx. I will see a neuro in July. We have long wait times for specialists here in Canada. Have you been Dx with MS?? How old are your boys?? Right now what keeps me staying positive is that I still have my husband and my son by my side, so I try my best not to be to difficult to live with. I also remind myself that my symptoms do go away where I get a break for while and feel like a 34 yr old should.. I don't know if I have MS it could be something else but I just feel likes it's something neurological.. I guess I will have to wait a few months to find out.

Take care,

Hope you have some brighter days ahead!!
Helpful - 0
572651 tn?1530999357
Hi Michelle,
You just wrote it out here for yourself to see - you are not yourself right now and your friends know it and so does your husband and you do too.  Of course you're not going to be your usual self- you are battling a really ugly disease and trying to get on top of everything.

Do you have some help with the boys?  Can you get some help with your house or other responsibilities you might have ??   I know that fatigued, legs made of quicksand feeling and it really takes all of my effort to keep going sometimes and I don't have children at home that I have to take care of ....

The memory problems can be MS but I wouldn't be surprised if it was also partly caused by axniety and self-imposed pressure you have to be feeling these days.  The more we push ourselves to do and remember, sometimes the brain and body rebels by doing less and forgetting more.  

I hope something in here makes sense.  I say good for your husband to step away from the conflict before words are exchanged that can't be taken back.  He has to be feeling lots of stress, fear and anxiety watching you struggle too.  Certainly you two will have a healthy conversation when he returns and I hope you will talk to your doctor about all of this.  A good neuropsych assessment would probably be of use too.

Please let us know if we can do anything for you.

Lulu
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