Aa
Aa
A
A
A
Close
364356 tn?1199868636

Help> Cognitive

When we think of cognitive the first thout that comes to mind is ones ability to think.  Because this is something that has begain to seriously hit home I have dodne a lot of research.  You would think there are many thisgs out there.  I was not so luck.  Because it was hitling me so hard it made it difficult to put words to what exactly I was experiances.  It was not until weeks later that I cam across 2 very help books that dealt with copping with MS cognitve issues.  For the first time I was able to put words to what I was feeling.  It has been a loong road for.  It to 9 years to be dx I had stayed pretty positive.  In the last few years I have decline but yet kept my head I had prepared by self for the physical, or as best on can.  But never thought about the cognitive.  It was until March of 07 when my family approach and explained to me the diferances that had taken place.  I know they were only trying to help.  Because we ran a family business they saw my everyday.  In the back of my mind I know I just thought I hid it well.  Besides I had always excelled at what I did.  I work late all the time to make sure the job was done right.  But I had to face reality.  I finally came to relize that maybe retirement woudl be a good this, evan at 38.  So after my husband was execpted at a hospital in Mobile as a surgery resident.  I toulght life was great.  Once we got here I enjoyed my life.  Of course this was short lived.  I developed a rare intra renal cyst after have a kidney stone removal, which with all the urinary complications I have has was not out of the norm.  With a few days later I was back in the hospital with a severe fever.  At this point is when the rare cyst were found.  I was sent home with a pick line and had to adm atibiodnets twice a day.  With in less that a week I was right back intothe hospital this time with a blood infection.  I had a fungus and the one that starts with a s, mind you a minute ago I knew the name.  They changed my pic line and added vacomicyne along with meripex(?) for amonth and oral antil fungal.  After that time the lines were removed and I was free.  Time frame end sept 07 to mif Nov 07.  For the next to weeks I felt great other than some sycope.  All of the sudden I woke up and like a ton of bricks this fog appeared.  I was unable to get up without being dizzy, I fealt dissorited.  I stayed in bed for about a week and the all of the sudden a fog started consume my brain.  I had felt this before but not this bad.  To this day it has totaly consumed.  I can not think straight.  Unableto keep my house in order.  My finances are in a chaotic mess.  This is not a matter of will power It is more like a convusion that has frozen my body.  I have tried to get into a phyciatrist but either they do do not take our insurance or the are not aking new patients.  And unfortinutly my neuro has just anouced he is retiring and has left us high and drie.  In Birmingham I never experianced this and Mobile was the last place that I thought this would happen.  The hospital my husband works at has started to gear themselves to an acute care center and no longer have alot of specialities.  Any helpor advice is greatly apprieciated,
Best regards,
Kelly dxd 99
MS Ambasador
Peer support co-leader
7 Responses
Sort by: Helpful Oldest Newest
195469 tn?1388322888
This is an interesting subject.  Would you please start a new thread, talking about the cognitive problems you have?  It would make for some very interesting discussion.  I feel that this problem will get "lost" in this post and your post is a very important one.

Even if you copy and paste what you first wrote, starting it in a new thread.  It's very, very interesting and something alot of our members can indentify with.

Heather
Helpful - 0
195469 tn?1388322888
If you are having this much diffuculty with these brain "fogs," you need to contact your doctor right away.

These exact same things used to happen to me (I have been dxed for 12 years) but they were fleeting, not lasting.  I had a difficult time with organizational skills, staying on task, remembering what I was support to be doing, etc.  I think you can totally relate to what I am saying.

To have these kinds of symptoms for this long, to this extent, requires some follow up care with your doctor.  Are you on any of the MS drugs?  Avonex, Betaseron, etc.?

I call these "brain burps."  It is very, very aggravating.  Especially when you forget how to put your hair in a ponytail.  I thought I was losing my mind.  Cognitive problems can be the most troublesome of MS symptoms.

Gosh I really identify with what you are going through.

Heather
Helpful - 0
Avatar universal
(Testing since 5/2007, dx'd 12/2007)

Can't wait until my brain fog leaves me!!!  I'm having a REALLY hard time.

For example, I'll look at a paper and decide that I need to create a spreadsheet to organize the information.  With the paper sitting next to me, within 5 seconds or less, I forget:  a) why I'm about to use the computer, or b) what program I'm supposed to open or c) what am I supposed to be doing once the program is open.  Times like that, I feel like a complete idiot.

More and more, I can't remember what I'm doing from one minute to the next.  My mom keeps talking about stress but these things don't happen to me when I'm stressed.  In fact, when I'm stressed, it's easier to focus myself and search my thoughts.  It's hard to get people close to you to understand that there's something going on in your head- and it's NOT stress.

Just this past week, a document on my desk listed a group of people involved with a project.  I couldn't remember who one of the people were.  I went so far as to say I didn't think we had someone in our group by that name.  I sat and strained my brain for a minute.  It didn't just come to me.  I had to think HARD and long.  After about  a good minute of pressing and talking it out loud, I remembered who the person was.  Absolutely frightening.  I talked to the person quite a bit the day before.

These past few weeks, I had more episodes of wondering what I'm doing or waking up and getting oriented to where I am.  The commute to work is about 1.25 hrs and usually starts around 6am.  My commute gets me home around 7pm.  My day is long so I may nap on the bus ride to work.  

When I wake suddenly from the nap, I open my eyes and I can't figure out where I am.  I strain my neck and my brain for clues where I am until I finally get it.  Last week, I got scared.  During one of those naps, I was so disoriented, I didn't know if I was sleeping on the way to work or coming home from work.  I had to open my eyes, literally gauge the daylight before figuring out I was going to work.  I knew who I was.  I knew I was on the bus but I lost all sense of time.  Unbelievable!

Does anyone else have similar disorientations?  
Helpful - 0
297366 tn?1215813051
I'm very sorry for what you are going through. I know that I identify with my brain a lot too. My husband told me that one of the reasons he fell in love with me was because of my "beautiful grey matter". (Isn't that sweet?)

I have experienced the braiin fog and lost the ability to organize and process as well. Luckily, it went away and I feel almost back to normal now. Perhaps with any luck, you will recover some, if not all of your former brain function. If not, then you'll just have to grieve and then do the best with what you have. It sounds like you have a wonderful family to support you. Thank God for that!

We'll be thinking of you. Hang in there!
Helpful - 0
364356 tn?1199868636
Far warning this is going to be not only a personal view but a vent towards our treatment.

Thanks you for your responces.  They have been very helpfull. Sorry to say never posted.  Found y'all a week ago and hate to admit it but I have been a voir? until now
I have never posted on this site before.  
   As with many it took 9 long torturous years to be dx (dx 30th b-day).  I am married, mother of 5.  2 girls, 14 & 16. 2 boys, 16, 19 & 21.  And a beutiful Grandson,9 months. Glad I had chilren young!  Don't think I could do it now. LOL

     As soon as I am able to post the story I will but at the moment my brain is in an unforminular place and am only able to focus on what is going on right now.  Not that the things that I have expieranced in the past do not have any relivance.  It is just very difficult for me to put them into words because I unable to focus.  
    For days I have been reading everyones post unable to bring myself to respond until I finally felt l comfortable and physically able to.  Y'all have given me so much hope that I finally relized that this is the place were I belong, a family, not to mention the wisdom and laughs you have given me.  

    To Quix I realy appreciate the help you give to others.  My husband is also doctor , I am alone alot ;-) >and when in public we are always stopped and asked questions.  He does not mind but gets tired at times.  God Bless you for your contributions!  

   I do plan on contacting the MS Society again but afraid I will get the same responce.  
    As far as the Omega 3 yes I do take it along with other benifitial viatamins and minerals.  

    Most of my life my intelligence became my identity.  The best example I could come up with is I think about people that their identity is their looks.  Heaven forbid if some kind of misfortune happens and they lose it?  The most important thing they are thought of is there looks, or so they believe.  My intelligence is the same way.  I know there is so much more to me but I can not find it.  Is this all we are based up to? Are we only given one gift that stands out above the rest or can we develope a new gift.  I do not discount the gift the gift that Heavenly Father that his provided us, All things are possible through him.  
  In my mind I know I am still smart it is just the path thats sends the informationtht is interupted and I can't find an alternate route. Instead I should  realy on the other qualitied that I pocess.  I am a good person, loving wife, daughter, friend and now a grandmother.  But I still can not get the fact that because of this my identity is gone.  At 38 I am scared that I am never going to find a way to enjoy life the way I use to. Work for me why not him.
    
              After my last test, and brain shrinkage, which showed a drastic decline a good friend jokingly told me, " Get look at it this way you are just like the rest of us.  It was her own way of comforting me, not being hurtful.   It made me laugh and also humbled me.  It never acured to me by saying this that mayby I was putting others down.  Talk about a humbling experance.  How dare I. I felt like what I said hurt people that I respected and loved.  She later came to me and said look we all have gifts that are not the same as each other and if I could not longer do what I best I would have a hard time excepting it.  Just because you are able to learn things quickly, of course you do not a lick of common sense lol we all have hard times and dealing with tragic events diferently.  What I was realy worried about was my mind was turning to mush and I had no control over it.  
Even though I was able to get over my pity part for quite some time it did not last.
      When the mental damged worsen I thought the physicall would be so much easier to handle. Of course this is always esier said than done.   However after reading y'alls post I know it is not.  Each come with there on defeats and triuphs.  It is just a matter of finding your own.  I know somewhere in my brain I am still here and this has got to give me hope.  I also understand that the physicall effcts are getting worse also and this has still gotten to be dealt with.  I guess the thing that frustrates the most is the fact that there is so little understanding on how to treat it us. Especially how live with it or even the lack of information provided to us.  What is out there sugar coats everthing or only gives brief explanations.  Don't get me wrong we can live a positive life just differant.  I just wish they would shoot it to us straight.  We are not stubid.  We have come through the hell prior to the dx and the unkown.  WE ARE TOUGH AND WE WILL PERSIVERE!  JUST GIVE US A CHANCE.  My gosh I have spend multiple hours and years researching.  

As far as the MS support groups out (except a few) there they give you the same generic answers and most are gear only on research.  Not nocking them because they have been a great resource for me in the past.  It just feels  tallking about the difficulties we experience are taboo.  " If you don't talk about it, it does not exsist"  Emprace it and enjoy life.  If a cure is out there great, we ned hope. However reading about the research does not help us pay our bills, raise our kids, have long healthy, positive realtions with life partners.  Face it not all of us can afford the best treatments or therapies offerd.  Doctors need to start treating not only the disease but the person.  Bottom life it comes down to "QUALITY OF LIFE"
Helpful - 0
Avatar universal
I also am sorry for what you are going through this disease just seem to take and not give. I hope you find a good neuro in Mobile.

Have you thought of contacting the MS Society?
If you do they can give you a list of neuro's that others with MS have had goodluck with, they may even beable to give you a list via email or good old fashoned mail, for a phyciatrist who deals with MS patients.

Its worth a try anyway.

Wishing you goodluck and a very Merry Christmas!

Kathy
Helpful - 0
220917 tn?1309784481
I'm so sorry for what you're going through.  I don't know if you've posted before or not.  If you haven't, I want to welcome you to the forum.  There are lots of people here that are about the nicest you'll find.  Stick around, and we'll get you on a the right path.  If not, we'll at least have a few laughs along the way.

I know a little inkling of what you're talking about.  Last winter, I went through a VERY hard time cognitively.  It lasted until just this past August, really.  It waxed and waned, but all around, I was a mess.  Not at all like you're describing, but I do know that desperation of not having my full function and it was frustrating and scary.  I do not have MS, but have had a weird history with neuro symptoms.

I wonder if it's possible for you to have a neuropsych workup?  Could you ask your primary care physician to arrange it, or perhaps your neurologist before he retires.  I had this testing done, and it really is painless; nothing to be afraid of.  It will help your doctors know where you are cognitively and perhaps see in what areas you need help.

Also, my neurologist wokrs with dementia and stroke patients.  He is a heavy duty researcher.  He strongly believes in Omega 3 fish oil for brain health and cognitive function.  I take 1,00 mg every day at his recommendation.  I don't go a day without it. There's no solid study to say it helps, but I trust this guy.  I have improved since I've taken it, but I can't say it's BECAUSE I've taken it.  Know what I mean?

I think the problems with cognition in MS come from the location of the lesions and from fatigue.  (Someone correct me if I'm wrong.) How long has it been since your last MRI?  What kind of medication do you take?  Do you feel like your disease and symptoms are being well-managed otherwise?

Please keep in touch and let us know how you're doing, Kelly.  See if you can set up a neuropsychologic test with one of your healthcare providers.  You really owe it to yourself.  

Feel well and have a nice holiday,

Momzilla*
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease