I feel that physical symptoms whether visible or not are something we can learn to gauge over time as we learn about them all. I was in denial about many of them prior to DX, but now through this forum, online information, my regular assessment with my doctor, I have a list and know what to look for.
I also put fatigue under "physical", and it's something that can be measured, how much do you sleep, need to sleep. How much effort can you do before you need to rest.
The emotional impact of MS is hard to measure but I think it can be discussed with doctors. They have now have good frameworks for depression that can be used.
The cognitive impact of MS is something that I struggle with quite a bit. And this is the one that scared me the most when I was first diagnosed last year. First thing I did is ask my husband and close friends to tell me whether they saw a big change in me. But it was hard to assess where I was at. I think it's easier to see up or down changes such as:
- Brain fog: I only realized how much brain fog was impacted me until it started to dissipate thanks to treatment. I can focus, I can actually write more than one sentence at a time, I can stay on the same task more than 20 min at a time.
- Short-term memory: It has started to improve - I can now remember the short 6 digit codes that are sent to your phone when resetting a password, no need to write them down. This is one measure of it. A year back, I would have to write down everything, every single point of information I had to deal with.
- People's name is still a big issue.
- I play games a lot. Did not really see a change there. I wonder about the effectiveness of brain games and tools.
I'd love to hear from others on this forum. How do they evaluate their cognitive abilities? where do they see MS impacting them?
Thank you.
Written by
anaishunter
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i too ask if my husbands see anything different that i need to talk to the doctor about for he would see it for we are together all the time unless one of us has a appointment with a doctor or just going to town for something ....at times my arguments get bad for we don't always come to an agreement on things ...it is so funny at times because we are trying to say the same thing to each other just saying it differently so that is what the argument is about when we finally get to the point but in the mean time it is very stressful...wow is it ...yes i have to stop and think about things ahead of time or i can get it messed up ....we have to go slow and that is so hard for me ...i use to do everything for he was gone a lot being a owner operator truck driver ...he could be gone one week to as much as a month...so it was me and the kids ...so now we both have the problem of remembering that we have to deal with everything together for we use to live our own basic lives so it is now both at home at all times ....anyway that is my hardest part of this disease is to let others at times to do something for me ...have a wonderful day sorry for the long talk...love to read about others and how they cope ....
I see this was written 6 months ago. But I totally understand. There are times there are pieces of information that I do know but I totally forget. Sometimes I am having a conversation and will forget mid-conversation. I pause and sometimes it may come back to me 3-5 minutes later. If I am interrupted during the conversation as someone wants to agree or disagree with their thoughts I wont remember my original thoughts. So frustrating as I always had a good memory. I totally understand your experiences. Have a great day.
I have the exact same problem. I see it like a thread. My thoughts are clear, but as I'm talking, the thread breaks and your mind is left hanging. I expect it to come back, and it may or may not. Very often it's gone completely. Is it just normal memory loss from age, or is it the MS? Hard to tell sometimes, but other times it's definitely the MS.
There are times that the first place I notice cognitive problems is when I'm sewing/quilting. I can't seem to make sense of the pattern and directions. Household chores and cooking become difficult, too, and often manifest as having a hard time thinking about what I need to do next, or wandering around. Sometimes the changes happen fairly quickly, but sometimes they are more subtle and gradual. Overall, I know I'm not as sharp as I once was, but I still deal with the roller coaster of changes.
yeah, making sense of things in space and time used to be easy, including looking at directions on a map. Overall I can think 1 or 2 steps ahead but no more.
I don’t often have isolated issues that pop up on their own anymore, it’s usually a package deal. I use to though. It was nice, now that I think about it 🤣 So, when it’s all hitting the fan, I’m not going to be the best at completing tasks, thinking through things, communicating, handling anything normal...it’s basically running on backup battery until the power comes back on.
We just did a post on this! anaishunter 🤣 honestly, my Neurologist loves the memory game's. And I do see a difference in things like remembering names, and appointments. Which have been a problem before. Now don't get me wrong, I still forget everything. Like trying to tell my daughter what I got one of the boys yesterday. Was going for targets, and ended with bullseye.😭😭 Good luck!🤗💕🌠
I use a simple memory card game app on Google play. The trick is really trying to remember what your turning over. Hidden like the ones we played as kids.🤣 I can remember a simple grocery list now, without writing it down. For me? That's a big deal! 🤗💕🌠
Awesome! Thank you so much; I am on a memory game app on Google Play. Eternally grateful. XOXO I love this new plan
I get frustrated with inability to remember names correctly, and now that I’m back working it’s more obvious because I work with new children regularly and often call them by each other’s names. I laugh it off when a staff member chuckles over it; but it bothers me because it is so clear to others. I wish there was a fix for memory and cognitive issues! My latest lesion was found in my temporal lobe and doctor did offer me Aricept to try; I didn’t like the side effects and wasn’t sure it did any good. Anyone else ever try that drug? I am still waiting to try Ocrevus, and praying over that decision. I did do the memory testing psych a couple of years ago; and the biggest thing I learned was stressing over it always makes my thinking and memory worse. Have a great day!
I am on ocrevus. For me it has helped that I have not gained new Leisions. I wish my memory was like it used to be. It's true. Stress is what brought on my MS. So I try to avoid it if I'm able.
Oh boy. I was an accountant for over 30 years and now I sometimes can't balance my checkbook. I pay bills online. One month I paid a bill twice. Next month I didn't pay a bill. I will not set up automatic payments because I don't want people having my bank account number. And I forget to write them down. Being on SSDI, I can't afford to screw up my checking account. So far, people have been great but how many times can you ask for a late payment fee to be waived?
Good post, anaishunter I still have a to-do list to remind me to do things. One day, I misplaced my to-do list, and I couldn't remember if I completed it! I decided that I completed it, and I was happy for over a week at my accomplishment(s). Then, I found it, a week later....
During testing I was told to remember 3 items and we would discuss another subject and then I would be asked to recite the 3 items in a few minutes. I already knew, good luck with that lol. So I was asked to recite the items a few minutes later, I could not remember them. But they sounded familiar when I was told what the items were. I tend to remember after thinking of the subject 3-5 minutes later. So frustrating.
I am fine when dealing with one specific topic, but if it changes rapidly to another topic then it takes me time to either find words or just the right argument.
I have been homeschooling my daughter for 1 1/2 years now and I have seen a huge change since I started. I have had a lot of trouble explaining things to her but thank goodness there is YouTube and other lesson plan online. I know the answer and how to get it but my words just don't come out right so she looks and smiles and tells me it must be time for a nap.
I got tested by a psychologist over the course of an entire day. I guess that’s how you officially measure cognitive problems.
Short term memory loss is my issue. I have paid something like $700 in missed appointment fees because I forget my appointments and they punitively charge me a fee. My psychiatrist would have his assistant call me a half-hour before my appointment so I could leave the house. I would hang up the phone, then walk toward my front door - and forget my appointment by the time I got outside.
I had to pull over on the side of the road when I forgot where I was driving to. I would be standing in a store and not remember why I was there, and have to leave the store. I forget wet laundry in the washing machine for several days. After washing my hair, I need to put the shampoo bottle outside the shower - because otherwise I forget, and keep washing my hair 4 or 5 times.
My bank account was overdrawn because I paid my mortgage bill twice. I double-order from Amazon. I take my Rx medication twice.
Short term memory loss is so frightening. Not only do you forget everything, but you‘re afraid all the time about what you forgot.
I'm lucky that I never had any flare-ups since my diagnosis and Ocrevus treatment.
Getting ready for a hip replacement on the right, while all my ms shows up on the left leg. It's not clear whether the wobbling is due to ms or bad hip or both. Another mystery that I'll have to reevaluate post hip surgery. My goal is to regain the ability to walk, even just 15 min, which I can't do right now because of hip pain.
Paper is my friend if i can find where i put it. truely....i sue marco polo for just my kids.when i play it back i can see if too fatigued of a day and im slurring my words.i journal which helps memory.i see a difference in writing and I KNOW i have missed a med food etc.That was interesting to me. Happy trails. not trials.
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A little help?
How did you cope when you were undiagnosed?
