I know individuals that have MS don't experience the same symptoms, relapses and such. I was dx with MS almost a year ago. I'm still young (22) and luckily am not experiencing any physical pain (some days I get fatigued real quickly, but not very often).
I've done some research that MS can effect our cognitive thinking. I've felt like my cognitive function has changed. It was ongoing for 6 years and I never knew why nor bothered to look into it until I had optic neuritis. I didn't act my normal self for many years (remission?) and I knew something was wrong. Fast forward to now, I feel like I can't handle stress as i used to and was dx with mild anxiety/depression. I'm much more negative now than before and that's not me! Also, it's a little bit more difficult to make a decision. I'm taking care of it naturally by going to counseling and I can say that it has been a HUGE help to me.
I'm wondering if any of you had/have cognitive thinking issues when you were dx with MS and what are some of the things that helped you move forward.
kflo If I were next door, I would come over with a jug of lemon tea and a cookie or two to chat about this. First of all, cognitive issues are common with MS for those of us, whatever our age. I am not in your age demographic, but others on here are, and they will respond in helpful ways. In my case, all sorts of everyday occurrences in modern day life stress my brain (crowded airports and other places, heavy freeway traffic, too much stimulation coming in on too many channels simultaneously) and cause it to shut down, barely able to function. My strategies are avoidance of situations/settings that I know will over stimulate my cognitive functions or when that is unavoidable to seek a quiet corner allowing me space to regain control and focus. You will find a way that works for you.
Yes! You are not alone in cog issues. I was DXED in May 2018 (53 yo) as my back and legs were stiff and my walking ability was well, frightening. Tired ALL of the time. With Ocrevus and mass doses of Vitamin D, legs and back are much better but, my thinking/cognition is still pretty horrible. Too much at any 1 time I become very short with people. Ive learned that I must take a break and regroup. I'm thinking of taking Ritalin to see if that will help me to focus. It's very irritating, but am optomistic that I can get my brain to be healthier as well. It sounds like you are being proactive, and with MS everything take longer to seep in and repair, but I think you will get it figured out. Good luck!!
I started to forget things more than usual in the years before I was diagnosed. I just figured it was age.
It was very frustrating but I adjusted my way of doing things.Post It notes,note pads,computer files,writing on my hand,blaming my sister.All very handy things to have around to help.
It's not to say that I breeze through life easily. I just make adjustments as things come up and try to maintain a good outlook on things. The small things I used to take for granted are often the best things.
I think it’s very common. Memory, mood and behavioral changes, anxiety (out of proportion to the situation), slowed thinking, slowed or difficult speech....and that’s just been my experience! 🤣 I’m also probably forgetting something. If you scroll a few weeks of posting, you’ll see how often we refer to these things, make jokes about them, etc.
Ocrevus gave me a break for a few months and it was the best my brain worked in years. Before that, I found having blood ketones at a certain level helped tremendously. Before that, I would use a ton of caffeine to make it through the morning and take a nap at 4pm. Somewhere in between I used guided meditation and I should get back to that but I keep forgetting about it. I’m in a much better place for now and the worst of the mental/emotional fog I can usually see coming.
Good on you for getting a counselor and taking care of yourself! 👏 They can’t make your brain work better, but they can help you deal with your problems better.
It's such a common problem with MS. I was shocked at the level of cognitive decline during my first relapse. Fortunately, it didn't stay in that profoundly difficult level, but I still have issues with it. Some days are better than others. One day, I feel as though I've got it all back, but on the next day, I can't make sense of anything detailed.
You're already doing things to help, and other members have given you good advice. We can't necessarily make it go away, but we can learn to adapt to our new normal.
Yes, cognitive (and emotional) issues are part of the MS journey. I probably had all of what was mentioned above but at a very low dose (inability to concentrate, memory challenges, overwhelmed by too much information, slow thinking, mood swings, obsessions, and more).
I only realized how bad it was when I started to get better every week, every month. It took Ocrevus in July '18, diet since May, exercise (more systematic since October with Yoga and meditation). I believe all three were essential in my getting better (this is my opinion).
I'm in the lucky bucket of people who have not had a relapse yet under treatment. But based on what I read on this forum, I know this might happen.
Being diagnosed and treated for MS gave me my old myself back because the cognitive issues are now being treated. And I don't know yet how much more recovery there will be. Only time will tell.
You have to be patient with the recovery. Get as much help as you can for sure.
kflo, it's Fancy1959. You are showing how much you have learned with your initial statement of saying that MS affects every single individual slightly differently and different people have different symptoms related to their MS. But from my 20-plus years experience I would say that as the years progressed with MS the one thing that is fairly common across the board is some type of cognitive change or decline. Since Ms is a disease of the central nervous system and a large portion of that system is made up of our brain every time we have an active lesion in the brain it directly affects our brain function on some level. Some lucky individuals are affected it very mildly while others are affected more detrimentally. On top of this due to the nature of this disease causing a decline or at or should I say increase in our disability factors as we see ourselves decline it is only natural to experience frustration and anger at what were experiencing.
What has helped me the most is to keep my brain very active and stretching its ability to reason and work in new and different ways by continually participating in and playing brain enhancement games on my notebook. I continually do puzzles, play word games like Scrabble, play cards with strategy and teamwork involved, and simply using my brain each and every day in fun in involving ways. I am not saying I have not noticed a decline in my mental compacity because I have, but I believe by keeping it active that it is not declining as much as I have seen in others. OK Google brain games and activities and you will find all kind of simple things you can do on a daily basis to help keep your brain active. They can be as simple as brushing your teeth with your off hand. As an example if you're right-handed brush your teeth with your left hand. Tie your shoes creating your bow backwards, Etc. I hope this helps. There are lots and lots of different activities you can do. Take care and remember together we are stronger! Fancy.
in reply to
Fancy 19591, thank you for the ideas! Just yesterday, some family came over and we played some board games like CLUE. It's a board game where you solve a murder. It definitely makes you think. It's quite fun but I'll be honest, many years ago I didnt enjoy it. But now, I think I will play it more often and buy some problem solving games to exercise the brain. I dont mind trying new things so I'm excited to see what helps me. Thank you ^-^
I think this is quite common with us. I still do well at making decisions and stress, but i do forget things. My phone 📲 has been great for this as i think of things I will put it in my notes 📝. I use this at night when I’m in bed 🛌 or I wouldn’t remember in the morning 😖. Then I have to remind myself to check 📝🤪. 👍🙏Ken 🐾🐾
Definitely!!! I have a hard time remembering things and have to write a lot of things down. I was tested by a neuro-psyche and he told me I wasn't getting stupider (I sure felt like I was) but my brain was "buffering" like a computer when it spins and spins. My brain just searches and searches.... For me this is the worst part of it. Your brain determines who you are. When it is affected it's misery.
That is why I don’t agree with people who say that MS doesn’t change who you are on the inside. Of course it does. If before MS you were never forgetful or at a loss for words, you didn’t snap at people, you were capable of complex tasks and were great at expressing yourself, had no problem controlling your emotions and felt good about yourself. Then MS has taken away “basic you”. I can’t remember something from 30 seconds ago, have great difficulty finding basic words during a conversation and even more trouble getting my point across without somehow being unconsciously offensive. I snap at my husband and surprise myself, because I was not aggravated with him at all. I can’t complete any tasks because I am so easily distracted by unrelated tasks. The damaged connections between my emotions and the area of the brain that is supposed to regulate and control my emotional responses make it impossible to handle what used to be minor stresses.
I wish that these incredibly common changes were recognized as a symptom instead of argued against. When I was diagnosed in 1999, the pamphlets said that MS doesn’t affect your personality. When it affected my personality, I felt like a failure. People should be educated about what MS does to the connections in your brain and be aware that Yes MS Does, change “who you are on the inside.”
Well, I agree and disagree. I think that being mindful helps with the snapping, etc. Nothing seems to help with word finding. I guess I feel that the base of the person is still there with the other bits extra, flux.
I agree with the buffering. Sorry! I've been working like crazy and haven't had time to respond, but boy do I totally understand about the whole "brain buffering" thing when it comes to word search. Just the other day I used the word "woof" in place of whiff. That's right. Woof. Odd thing is I felt like I said the wrong word, but I couldn't seem to find the right word until my coworker said, "you mean whiff?" And then it clicked. Busted out LAUGHING. Which I realized that I'm still me. The symptom that does get to me is fatigue. I'm still young and yet I feel like I can't make it through my 8 hour work shifts.
Yes! So frustrating, I started Ritalin a few weeks ago and it helps me with focusing on tasks (Modafinil did not work for me).
I was DXED a year ago and tried the provigil/modafinil and nothing. Ritalin, much better for this (for me). Ritalin is a drag to fill, must go monthly to physically pick up the prescription each month (pharmacy needs a new prescription each time) but other than that, it is great.
Good luck and please post back with what you find that works for you!
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