Please help: cognitive issues

[jjs]

HELLO!

Thanks to all who replied here. I must have just not felt too good for a while and then forgot to check this thread.

A special thanks to 'PuppyMumma' for the last response. As an update, I am STILL burning myself a lot. You should see my hands ... right now there are 6 visible burn marks on them, one being nearly the size of a quarter! (that one was a nasty one that took a long time to heal up.)

A few months ago I put up a large cork board and smaller white board in our laundry room/back door area. This has helped to give a place to write and keep notes and other things I want to have at an easy reach. Also, my daughter and I sat down not too long ago and really hashed out our daily 'to-dos' so we could coordinate with each other to make sure everything gets done that needs to be done.

No, I have not heard of the 'spoon theory' but will look it up.

I had a neuro appointment scheduled for last december but cancelled it. I set it again for this coming june but then the neuro needed to change it so I just set it for this coming April 29th. There will be repeat MRIs and then a talk with the neuros (they get the MRI results right away). I'm looking forward to the visit.

Oh yes, and I still have cognitive issues just as before. This has not seemed to go away but there are certainly better and worse days.

Thanks again to all!

[Ikaika]

I can relate! My neuro, a MS specialist! calls it PEANUT BUTTER BRAIN. How true is that??

I've tried calling it quicksand in my brain, but that would move too quick. she explained it's like the wheels trying to churn through peanut butter. Spot on.

I've tried Provigil and amantadine with no effect. I just started Nuvigil. It definitely gives help for cognition, and even my othe daily symptoms seem tamed. That could be coincidence, I have no idea.

However, I started at 250 of Nuvigil and it was like I was on IV solu medrol. Seriously. I have cut back to 35-40mg and am better, but I probably need to take between 50-75. It still interferes with sleep, but mental clarity is noticeably improved.

We all have to find that magic chemistry for our bodies- and trying to do that with it changing every second, literally, is half the madness it seems.

Keep calm and...do whatever we must

Thank you!

[Ikaika]

PS the website Lumosity, helps brain function. It even gives you reminders to exercise your brain .

They are basically games designed to improve designated areas of your brain.

I just use the free version and it helps- I think...

(Sorry if someone already posted this info)

[artfan]

jjs

Hi there...I am new to this site and not sure how to navigate it but here goes...

What you described is exactly what I am living...finding/losing words, the spelling problems, the lack of memory, the nightmare of trying to "keep up" (not to mention understand) in the midst of many conversations going on a once, or even just one, all of it...and to top it all off, I haven't even been diagnosed yet! I also have problems getting what I want to say to come out correctly. They sometimes don't match up. What I mean is, if I want to say is "put away your lunch" it might come out as "prepare your snack"...which actually happened in my classroom last Fall, before I was obligated to go on sick leave! Soooo embarrassing. The kids thought is was funny.

I'm really sorry you feel this way and what you are going through but, on the other hand, you are not alone! I just try to take it in stride and laugh it off. My kids and family are getting used to it. However, it is frustrating and stressful so just take one step at a time, stop and take your time when trying to get the right word out...or ask for help...no shame in that. I do and it works for me.

Take good care!

[jjs]

Hello and thank you for the note!
It's been a while since I've been on here ... higher priorities I guess.

I had a pretty good summer - the best since all of this mess began. About a month ago I started feeling worse again but I am managing it all pretty well enough. I cannot tell if I am just getting adjusted to it by now after about 4 years (?) of not doing well or if I just really did have a better summer than usual.

I've been careful to take a lot of vitamin d3 (the garden of life raw d3, 10,000iu a day) so maybe that is helping? I also take the b complex from the same company.

I might post a general update

I hope you are feeling well. Thanks again! jjs

[reaching]

Glad to hear you're doing better. I just posted a thread about cog issues too. It's the most frustrating symptom of MS. I completely understand what you're going through. I'm glade you're doing better. Stay focus and strong.

[bobus498]

Just Remember,



Spel Chek is yore frind.

[momnmore]

What I have learned to help myself in the cognitive loss arena....

THERE IS HOPE: After 15 years, my cognitive loss is ALSO my most hated symptom..Here's what I have learned:
TO BE KINDER TO MYSELF; getting upset only hurts my trying to get things done; I think my MS has made me more sensitive to sensory input;therefore if there is a lot of noise, music, activity around me, I cannot focus! (Reading Adrenal Fatigue by James L Wilson has given me some clues)
1/my brain is malleable and has the ability to "rewire", and what I used to process along at highway speed I cannot process That quickly BUT through taking the time to figure out what works for me, I CAN GET THERE (biway speed)

2/I am used to doing things quickly and now am slowly(stubbornly) trying to take time to plan ahead, using all the tools available to me to achieve my goals-I try to use my iPhone exclusively for a calendar notes and any other bits of information I might need

3/I try to take the time every day to prioritize what needs to get done-this helps me from getting overwhelmed and depressed

4/I have used/done COGNIFIT for 2 years now; noticed a huge increase in my cognitive ability the first year, stopped using it for a while and my scores went down, and I am working to bring them back up again… This helps with multitasking and memory..

Hope this helps!

My most hated symptom BY FAR is cognitive issues. My short term memory is pathetic. It is very hard to make decisions and process information. It's like my brain is in slow motion. Problem solving is a real trial. Being in a crowd with lots of things going on around me is chaos to the extreme. Concentration is poor. Fighting frustration at myself for my slow brain. The list goes on and on.

I used to be a fast typist. Really fast. Now I am so slow it's frustrating. It's like going from super high speed internet to dial up ... or worse. I can use that same analogy for my slow-motion brain too. Dial up speed.

I also have issues with spelling. I used to be an "A Student" when it came to spelling. Now I mess up the simplest of words. I usually, eventually, catch the mistakes but it takes a while sometimes of staring at the word and thinking "now that's just not right" ... and sometimes it's so obviously wrong that I just have to laugh at myself.

Example: I just spelled "speed" "sepped". At least it has the same letters. Often times half or all of the letters are not even supposed to be in the word I am trying to spell.

HELP! Does anyone have suggestions on how to help with these issues? I have been making schedules to help keep me on track, but the problem is I often do not feel good enough to follow the schedule so it's all in vain anyway. I take lots of notes but forget where I put them. I rely on my cell phone calendar a lot. This is the only consistent thing that seems to help.

Any other ideas? Will this get better??? I'll be very honest here, this symptom is very scary to me. I feel like I'm literally losing my mind.

[Deer In Headlights]

Dumb and Dumber

I was diagnosed 5 1/2 years ago. Sometimes I feel like Charlie in "Flowers for Algernon". I seems like I'm watching my IQ points drop. I'll take notes sometimes to remember, my problem is that I forget where I put the note. It's frustrating, and then you worry about it and it screws you up even more. Sometimes it just hurts to think. I try to turn down the lights and noise when I'm feeling down. Wait a minute, I'm a Intermediate School Teacher. I'm just complaining right now because I'm tired of all of this. I'll rebound later, I'm tired.

[kathyj1]

I know how you feel!

First the advice to slow down is right on target. The faster I go the worse it gets. I've had psych/cognitive tests 3 times since dx in 1991 and always come up above average so drs not concerned BUT I used to be way better. I know that I'm not as sharp.

The 1st cognitive thing I noticed when diagnosed was that my internal clock no longer worked and it hasn't improved. Used to be early now hard to be on time for anything. Before smartphone, I kept a little bound index card notebook with bright colored cards so easy to see and pages did not tear easily. I now use Galaxy Note phone to keep all my notes (just remember to back up often and set the timer when I shop or alarms for appmts. This has really helped me and I use another phone to locate it if I mislay phone in the house. I keep up with it better my wallet.

Try taking deep breaths and look into some of the tips and tricks for adults with ADD/ADHD.
And remember we are harder on ourselves most time than others.

[Sirike]

Totally Understand

I totally understand what you are going through. I have always been a straight A student and finished at the top of all of my classes. Currently I work for the US government and need to take classes for my certification. I failed my past two classes and the gov classes are not meant for the genius types. No one understands what I am going through, even my neurologist says it's age, I beg to differ doc. It hurts to look at what I am now compared to what I was. Oh well, such is my life with MS. hang in there. mde

[daraslyte]

I totally understand what you are going through. I have always been a straight A student and finished at the top of all of my classes. Currently I work for the US government and need to take classes for my certification. I failed my past two classes and the gov classes are not meant for the genius types. No one understands what I am going through, even my neurologist says it's age, I beg to differ doc. It hurts to look at what I am now compared to what I was. Oh well, such is my life with MS. hang in there. mde

I completely understand the cognitive issues that come with the ms.I too have to write everything down , alot of the time i will write the same stuff down over and over just to understand what im trying to write .

I will also write stuff down several times because i forget i already wrote it down before. I also have issues remembering to look at my notes i wrote down also.


I feel like a mentally handicap that dont understand alot and i keep having to ask people to explain themselves because i cant catch on to what they are saying . That happens alot .

So in closing dont feel bad i think it happens to us all with ms. I hope things work out.

[jjs]

Update ...

I wanted to give a quick update here ...
First, I appreciate all of the input and comments

I have been gluten free for about 3 months and that seems to be the ONLY thing that has consistently helped with 'cog fog'. Maybe it's a fluke? Maybe not. I'm hanging in there with my gf diet until further notice.

Of course now I'm wondering if any of you have tried going 100% gluten-free? If so, please share your experience with me. Thanks!!

[lisams]

I wanted to give a quick update here ...
First, I appreciate all of the input and comments

I have been gluten free for about 3 months and that seems to be the ONLY thing that has consistently helped with 'cog fog'. Maybe it's a fluke? Maybe not. I'm hanging in there with my gf diet until further notice.

Of course now I'm wondering if any of you have tried going 100% gluten-free? If so, please share your experience with me. Thanks!!

i have been gluten free for years. haven't noticed any help with cognitive issues,

[jjs]

i have been gluten free for years. haven't noticed any help with cognitive issues,

Hmmm.....
I'm sorry to hear that! Most of my cognitive issues are still there, just the confusion seems to be somewhat better. It seems at times other things are better too but then I go downhill again.

Have you had any positive results from being gf?