I have been diagnosed with MS since 2005. I am currently not on any meds and deal with the "issues" as they arise. Temporary vison loss, limb usage, pain, fatigue, etc. But lately I feel like I losing my mind. I am another wise healthy 41 yr with a great husband and daughter, but I am have been having lapsing of memory lost that are making me crazy. I mentioned it to my neuro who said it could be attributed to MS, but told me I am not getting any younger. Of late it has been names...recently met people as well as people I know for years. I wait until someone says their name and I do recognize it but its like it was stuck in a fog...VERY Annoying! Is anyone else experiencing this? Or I am just getting "old"!
I can relate. I say like words but not the one I want. Now I can't spell either. Today I was talking and totally blanked out. The only good thing is I used to not be able to turn my brain off with my Bipolar mania. Now my brain feels blank.
I started leaving the burner on. My husband has to check. I am only 46 years old.
When i'm in one of my episodes (un-known dx) the thing that stands out to everyone who knows me is my sudden lexical losses, specifically nouns, i have had an issue with remembering names since my 30's, old age is doubtful :-) but i cant say why just that its another episodic thingies that comes along with all the other stuff.
I'm a talker, always have been verbally gifted so when i'm unable to communicate, it not only freaks me out but everyone around me. The latest episode was a little exstreem, I stuttered and slurred, struggling to find any noun eg. whats the white stuff called that i put in the stuff i always drink (milk in my coffee), try having a conversation with out using nouns, it aint easy. I couldn't even name my children at the time, it is better to go easy on yourself, dont get frustrated it only makes it worse, try and find a light hearted mindset. My kids can now name all the whoova whats its and watch a macall its in existence, they are probably really good at the game 'who am I' too. :)
So what i'm trying to say is.... me too! me too! me too!
OMG..Yes. I feel like the physical things I can handle. I am very "vocal" as well. Nouns are a problem as well...When I'm into the "whachamacallit" stage..everyone looks at me ..." are u alright?" Most of the time I can handle it..laugh it off and shrug..but sometimes I feel like this is crazy....I guess I have been going through this since 99. Been a real fun ride, but I do feel better that I am not the only one "losing it" thank you very much!
Hi, Donna. The suggestion by your neuro that memory issues at 41 is normal is ridiculous!!!!! What an inane thing to say.
Cognitive problems go hand in had with MS. Period. The most common problems are memory, especially word recall and things like name recall, problems with executive function like rapid-decision making, multitasking, and slowness of analytical thinking. We don't actually lose IQ points, but we process MUCH slower.
This kind of problem is associated with the gray matter lesions that we all have.
Your neuro should be referring you for neuropsych testing to see exactly where your cognitive strengths and deficits are. Many here have had this and it can be very enlightening. It can also point to the exact king of brain retraining therapy that might help. We know that the MS brain can be retrained - a process known as Neuro-Plasticity. Our brains really are fairly "plastic" meaning we can form new brain signal paths the go around the areas that aren't working so well. Here is a Health Page on the topic:
Neuropsych testing should be done on all who are having noticeable problems for a baseline.
I am much more "verbal" now when I write. Maybe this is because of the slowness of my typing, but my word recall is better then, too. When I talk, I pause for a word or concept every couple sentences as my family plays "guess what she's trying to say." I, too, used to be extremely fluent and articulate with a gi-normous vocabulary. Alas, those times are remembered now only in song and fable.
Real dementia is very rare in MS. Generally we are much slower, but we can get there. On the other hand, cogitive difficulties are one of the major reasons why people leave the workforce. It was what caused me to leave medicine.
It doesn't sound right to me that at 41 you would be having trouble with names especially if you didn't before. That's probably one of the first cognitive things I noticed right away at work was my inability to remember close co-worker's names. That had an affect on me. When you tell someone else that your having problems remembering others names they usually answer well don't worry about that I forget peoples names all the time.
Well it's different when you know you never used to do and when you know it's a normal part of your forgetfullness did I explain myself right???
Curriosity, have you also found dates a problem? I seem to have acquired the loss of dates too, well its not lost completely, i can work things out but sheesh its a bit of a problem when your saying happy birthday with all the bells and wistles on the 10th of the 8th month when his birthday is on the 8th of the 10th month.
My twit of a neuro tried to tell me it was all psychological, now this is whilst i'm walking like a string puppet, action tremors in left leg, arm tremor, hyper reflex, and visible spasms, burning, buzzes and zapping spots etc etc. i think he was a little annoyed my MRI didn't explain what his eyes saw so i must of created it with the power of my warped mind lol. I can make people 'think' they see my feet are purple and they also 'think' they see my body twisting into a pretzle too, lol.
When i specifically questioned the lexical losses he said i could have senile dementia, well i've never heard of episodic dementia and since when did the word 'senile' describe someone in their 30's, which is the age i was when the episodic lexical issues started. I could probably swallow that pearl of wisdom if i had at least one family member that actaully had dementia, not even those that reached their 80's had any sign of dementia, now if he'd said i'd had a stroke instead of 'irrelevant bleeds' i might of believed him but alas i think he was a twit without logic.
I have done a lot of research on the causes of acquired lexical loses, demetia such as in alzhimers is mentioned but (its a big but), its a late sx and usually in the elderly 70's+. Lesions are the more commonly refered cause (when there isn't acquired brain damage etc) in people our age, i'd have to look it up again to name the suspected area.
I too can handle the pysical stuff but I find this issue changes me and i'm not going to accept it easily, it took one hell of a fight to get to where i am now, until its out of my control i'll keep on working this brain of mine, lol
My cognitive issues began about 3 years after my initial diagnosis. I was taking a college course with my son and realized that I was having more trouble understanding the professor and reading my text book than I had several years prior. Soon after, I began having trouble on the job, understanding what my customers were trying to tell me, reversing numbers and ordering wrong parts, forgetting names, etc.
Now, 12 years since the initial diagnosis, I really cannot remember names, cannot keep up with conversations (sometimes even cannot follow the sermon in church) And follow directions...boy, if I dont leave a trail of bread crumbs at the Dr. office, I cannot find my way out. Even the exit signs confuse me.
I agree with everyone here that the cognitive stuff is far worse than the physical and is the biggest reason why I cannot return to work. With MS we look good on the outside, so it feels as though folks just wont understand why we seem so...well, kinda slow I guess. My Neuro says my brain is full of roadblocks which is why I cannot precess information as well as before. Oh and typing, that is a nightmare. Even spellchecker cannot recognize the words I type. I copied & pasted my word for college ...cloogeg ...ANd I used to be a very good typist. Honestly, I think I type the way my brain (smifires) misfires!!
Hang in there, Donna201. It is NOT because you are getting old. I am working on trying to accept the way I am, know that God at least understands what I am trying to say, and that the people who love me are really OK with it. I think it is harder on the person with MS than it is on others around them, because we KNOW how we used to be.
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