Um, not sure what happened but its the second time in a week and i really dont get what is happening to me. OK before i explain, i should tell you that it was so out of character for me, that my Aspie daughter who has a very very short fuse, was very aware that some thing strange was happening. I wasn't making sense, she said i looked frightened and confused, how i was reacting was not logical and didn't resemble her mother, who has always been calm and laughing things off. Thank fully she recognised the strangeness and waited until i told her how frightened i really was, oh god i cried in front of her, something i dont do because it scares her, today she saw me falling apart and i cant explain to her what I dont understand myself.
All she did was ask me where something was, she's grown up with a mum that knows where everything is, its sort of like a photographic picture memory and anything at all would pop in my mind by simply mentioning it, i could do this with audio too, if i've heard it i could repeat it word for word. Ummm, its all gone and I do mean gone!
I evoke the image and there is nothing there, a black hole of nothing and it renders me temporarily in fright, confused and lost whilst i try and find the missing pieces, the more i try the more aware i am that something is wrong with my mind. I just dont understand why but i sound like i'm also peed off too, thats not me at all, sheesh i really am ridiculously calm, its a bit hard to explain. This also freaks me out, i know i'm not sounding right but have nothing to get me back on track, its like i'm a witness to it. Freaky no longer having something you've had all your life.
I wish i could explain it as a panic attack but its really not that, there is no body response at all, its definitely just my mind and i start lossing control of my tone as i try to work through my confusion, i dont feel angry at all. I'm expected to still have this knack and i've been trying to explain to my family why its so important to put things where they belong, not to rely on me but its not working out how i hoped.
I dont think i will ever stop this, i do fear lossing more of my mind, its hard not to with all the cognitive things that are happening. I also know i need to see a dr again but i just cant do it, beyond all the technical details of getting to one but i just dont think i can go through that again. I wish i was depressed then at least i'd have something to work towards but i just cant fake feeling down to get some help, though i have thought about it lol.
Seriously, this is really wrong, but how the heck do i explain i use to have a photographic and freaky audio memory but now its gone, when they already didn't think i'd lost enough IQ points to mean anything, because i was still with in normal range, even when it really meant i'd lost IQ points of 30 or more.
I'll be honest with you, i think i can deal with all the physical stuff but i'm not ready for the mental losses, they freak me out when its more than cog fog, its like reality is slapping me in the face and theres no going back to yesterday.
I feel like i'm running out of time, i dont know why that is exactly, i suppose its how far is this going to go and will i still know my self lol.
I can completely relate. It's been brought to my attention that I do not remember things. It's not that I've forgotten, the conversation never got stored in my memory. It is frightening, because I have no idea how many times this may have happened. According to my 20 year old son, this has been going on for quite some time now.
We had a phone conversation about a month ago while I was at work and I do not remember it at all. My son then asked me what I did for that last hour at work. All I could remember was that it was something productive, but for the life of me I cannot tell you exactly what I did.
So I can totally relate. For important things, I write notes on my calendar which I never had to do before. As for conversations, one can't write everything down! At work, I rely more and more on email.
Thanks for responding, i really appreciate it!! :-)
There's no way i could do any of the various jobs i've had, apart from the physical issues that would stop me now, i think the cognitive issues would make it even more impossible. For the last few years i've been working with kids who have disabilities, i had to be good at what i did because these kids deserved nothing less, if your not on top of your game it easily affects the kids.
With Autistic children you have to be aware of everything thats going on around them, you have to be able to read all their suttle signs and understand all the different meanings, each child is different. You also have to be ready for anything and be prepared to circumvent. You have to know them very well, thats all before you takle their educational needs.
I loved every minute of it, i miss them but i cant tell you their names anymore, i'd never keep up with the attention to detail, never keep up the with the physical demands either lol.
My executive functions are toast, it feels so strange to not have the wetheral to work something out, something so simple can derail me now. I cant even work out the steps to get back on track, feels so abnormal to have these moments of nothingness. I actually think i'm so shocked by them, what i expect isn't there so i'm stumped and dont know what to do next.
I feel vunerable and on a journey with an unknown destination, one i didnt choose to ride!
I completely agree w/ you! Although I am still (sometimes) trying to come to terms w/ some of my physical issues.......The Cognitive (mental) issues I can not get a grip on either!!!!
There is a bumper sticker that read..."Of all the things I have lost, I miss my mind the most" that pretty much sums it up...Wouldn't you agree?
i try and do little games to stimulate my mind like people suggest but even that turns out to be a joke.
And Not to worry about your explanation because those of us who have this know Exactly what you are talking about! yes, the Journey to the Destination of the unknow....I think we both should jump ship...Lol
Audrey: Like you I also at times supposedly have these converstaions w/ people and about something I know NOTHING about! it does not even FEEL familiar.....i can not pull it up from Recall or nothjing because it just does not exist to me...
I might have to find that bumper sticker, i had a dream the other day that i got a med-alert bracelet that said "if found, call xxx" it was just the same as what you have on dog collars lol
I'm still not sure why there isn't much to help with the cognitive problems that go beyond cog fog, in the studies i've read there seems to be wide acceptance of 50 -60% of MSers disclose cognitive deficits. It wasnt long ago that MS was thought to be a white matter disease, with grey matter mainly uneffected, rare black holes etc. There is still so much to learn, i just wish there was more weight placed on the cognitive issues that are so so common in MS.
It boggles my mind (lol) that when a young person is experiencing cognitive sx of this type, not normal unless your in your later years of life, its not often investigated, I doubt its even accurately understood so its dismissed as not being that big of a deal. Sheesh this alone is life altering, it just affects everything and it changes you big time, big deal in my books.
I've had some issues with this. It seems to come and go. I had (notice the past tense) a photographic memory, but it seems that has gone as well. I've always been the one, responsible for paying the monthly bills, knowing all the important dates, etc...I would recall this just of the top of my head. My husband has, what I call selective memory, he remembers, only some things, so it's always been me, that has to remember.
I've noticed now, that I can't do what I use to do. I can't just implant something so easily in my mind. I have to write everything new down, and sometimes I still forget. It's hard to get use to, because I was so use to the "old me" that could just go over something once, and it was there. Now I find myself struggling with, silly things, even stumbling over my own age when asked, SS #, birth dates, when I got married...things I should know and should have no problem recalling. And don't get me started on stumbling over simple words and trying to spell them (Thank God for spell check).
The physical issues are hard to deal with, and I'm still trying to cope with walking issues. My doctor gave me a cane to help. I felt weird about using it at first, wondering if people would stare, but then I got to the point, I really didn't care.
Cognitive Issues are a totally different realm. Your doctor can't give you a cane for that..I agree with what you said about young people experiencing cognitive SX and the doctors either don't investigate it, or they don't understand it..I think it's often dismissed because of our busy lives, and doctors down play our SX, thinking that we are overworked, stressed out, and not getting enough sleep. I think that goes back to the easy answer of things, but this is not the answer when it comes to diseases that attack the brain. We know how we use to function..and now..not so good.
I'm hoping I can adjust to the "new me" even though I protest it, and hate it every day.... I can't control it, so I coupe with it by using "crutches" (writing everything down), and trying to excercise my brain as much as possible.
Cognitive issues! That is one that has me very scared right now. My language skills are way off...first it was just verbal, but now it is written as well. Both typing and handwriting. I feel like a dyslexic at times.
I'm in one of my worst periods since I acknowledged sx 7 years ago. This spell started in January and has not let up. Very few good days. Seeing new neuro on Tuesday, one who specializes in MS.
It even effects my reading speed, because at times I will read a word wrong and know that it does not make sense in the sentence so I have to go back and read it again.
I'm a Director of Finance, so that my job does require me being on my toes in terms of cognition. It is scary to see things go downhill and have to figure out my own system of internal controls- accounting terms for safeguards in place to prevent or detect weaknesses in systems to minimize the likelihood of errors.
My conceptual thinking is still all there for now. If that goes, I'm a goner!
I can still do the Sunday cryptograms, but have trouble with a handwritten note! Go figure! Maybe it's the amount of concentration required.
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