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
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
(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?
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!
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"
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
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*