My Cognitive Issues and General Decline

[Mamabug]

Kittysmith

((Hugs))....

[kittysmith]

glad we have eachother too

So sorry you are having these issues. The take-away I get from this thread is that we, the patients, are on our own with so many of our symptoms. We almost have to diagnose ourselves because our doctors just don't get it.

I suspect that most of us don't get much help from the medical world with these problems. We know when something is a MS thing even if our doctors don't catch on.

Glad we have each other!

Today has been an exceptionally stressful day. The office is hot, there are too many people working, so it's loud, and I had a bit of an issue with one of my coworkers. I'm not good with confrontations. In the midst of all this, I tried to tell 2 coworkers where my patient needed to go. I mentioned 3 different floors before I found the right word. In the meantime, my coworkers laughed and said "you're confusing us". They don't know the half of it. They weren't being mean. They didn't know it's MS related. It just made me feel sorta dumb. I finally said, "Well, Ladies, that's how my brain works with MS. Sorry".

Got reassurance from my boss that I was doing fine. Have another 12 hr day tomorrow. Fingers crossed.

[marti]

So sorry you are having these issues. The take-away I get from this thread is that we, the patients, are on our own with so many of our symptoms. We almost have to diagnose ourselves because our doctors just don't get it.

I suspect that most of us don't get much help from the medical world with these problems. We know when something is a MS thing even if our doctors don't catch on.

Glad we have each other!

[polopuppy]

I have the same issues, and am on a leave right now because of cognitive issues, along with other flare problems. The most recent cognitive manifestation has been a form of aphasia, called functional paraphasia. I experience the word finding issues and the inability to spell or to recognize if a word is spelled correctly. I can't remember a phone number or a string of numbers given to me. I couldn't even remember my address or telephone number last week!

I have had two neuro-psych exams and will have another next month. The neurologist felt I was functioning quite well, despite several deficits. I had processing and executive functioning disorders that worsened by distraction or activity around me. My last exam was over two years ago so I am hoping things have not deteriorated too much.

I agree with others here that stress, poor sleep and the demands of work really intensify the issues. Being off work hasn't cured me, unfortunately, but my cognitive issues seem improved. I now have to see if the testing agrees with my perceptions.

[502E79]

Sometimes I will type or write a word and it looks like it is misspelled. I will even look it up and it still looks misspelled, a few mins. later the word looks normal. (very strange)

At times I have had a word "on the tip of my tongue" or blanked out mid sentence, fortunately not often. I point to my age as suspect rather than MS, but do not know.

The above by REG53 stands out. Have experienced the same and find it VERY disoncerting.

Kittysmith, I would like to hear more about your scheduled cognitive tests. What they consist of and what you may have learned.

Jer

[kittysmith]

Glad i'm not alone

I'm comforted by the fact that many of us share these symptoms. When I'm writing I always mix up "p" and "b". I write completely the wrong word. I've had a terrible time spelling lately. It's the total blanks that scare me the most.

I have been set up for a new cognitive test. It's been years since I've had one. I'm interested to see if there are any noticeable differences.

[REG53]

Hello Kittysmith,

I can relate to not being able to spell words I've spelled for years and can't think of words while I've talking. Sometimes I will type or write a word and it looks like it is misspelled. I will even look it up and it still looks misspelled, a few mins. later the word looks normal. (very strange) (had to look up strange and it doesn't look right.)

I'm sorry about your job and I hope it works out for you.

[KoKo]

I can tell you that since I stopped working, my cog fog is actually a little better.

This is true for me also.

My cognition was greatly affected by the fatigue from working 8 hours (even after being on light duty for the final few years), and by the anxiety caused from the internal and external struggles of trying to keep functioning like 'normal' at work.

With sensory overload greatly reduced now in retirement, my cognition is not too bad at all.

Take Care

[pennstater]

I can relate. When I read what my old boss wrote about his observations over time in support of my disability claim, I could cry.

My employer made accommodations for me as well. It was then hat I disclosed to my coworkers. Most had been ok, thinking there was a good reason for the changes, but one felt it was favoritism. I told him I would gladly take his responsibilities if he could take my MS. He later apologized.

Getting another assessment may be a good idea. I can tell you that since I stopped working, my cog fog is actually a little better. The fatigue was affecting my performance. So some may be MS, some could be fatigue, stress related, or even medication side effects. Regardless of the cause, it has the same affect on us.

I know you like the 12 hour shifts, but it could be too long a day and impacting your performance. Just something to consider.

[loopey]

Me too

I have had the same issues. I can't spell anymore and words do not come to mind sometimes. I thought it was because I live in Italy and have to navigate the language but realize now it IS an MS thing. I had the cog test done about 2 years ago to get a baseline and it went very well. I don't think it would be so good now!

[Mamabug]

I don't go through that, exactly. But there are cognitive tasks that I just can't do in the evenings. I'm New Year's Eve, there was a visual acuity game that I just couldn't do and I knew it was an MS thing.

[kittysmith]

Thank you

Oh kittysmith - I went through the same things when I was working. I requested less hours to help with my fatigue, so the scheduling had to be changed with my co-workers. Some were ok with it and others grumbled . I too felt guilty at first, but over time I had to let it go... it didn't serve a purpose anymore and interfered with my work.

Have you met with a neuropsychologist to run testing to evaluate cognitive problems?
Here is some info on what it entails-
https://www.webmd.com/brain/neuropsychological-test#1

If you haven't had testing done yet, it might be a good idea for a baseline assessment. And for future reference, if at the time you might want to go on disability insurance, it will factor in your eligibility.

Hang in there!

I had an assessment several years ago. Perhaps it's time for a new one.

I don't like not pulling my weight. I've been in this job for a long time. It was a blow to my pride when I was told I couldn't keep up. I felt so stupid. I'm working on accepting it. It's hard to admit you can't do what you used to do. It's also scary to be told your disease is progressing and you have to start a new DMD. It all hit me at once in the same week. I'm nursing my wounds, lol.

[Seasha]

It was presented as a way to decrease my stress. Instead, it just makes me feel guilty that others are having to pick up my slack. I've had one of my coworkers tell my to put my health first over my pride. That meant a lot. But I can't shake the guilt.

Does anyone have this type of cog fog? It's very unsettling. I worry about how much longer I can keep working with these symptoms.

Oh kittysmith - I went through the same things when I was working. I requested less hours to help with my fatigue, so the scheduling had to be changed with my co-workers. Some were ok with it and others grumbled . I too felt guilty at first, but over time I had to let it go... it didn't serve a purpose anymore and interfered with my work.

Have you met with a neuropsychologist to run testing to evaluate cognitive problems?
Here is some info on what it entails-
https://www.webmd.com/brain/neuropsychological-test#1

If you haven't had testing done yet, it might be a good idea for a baseline assessment. And for future reference, if at the time you might want to go on disability insurance, it will factor in your eligibility.

Hang in there!

[kittysmith]

Blank moments

I've dealt with it repeatedly, but generally only when I'm in a relapse or extremely tired. Several years ago, I had issues with it for 9 months, then it just suddenly got better.

I'm one of those people who always pictures things in my head, either actual pictures of what I'm thinking about or just the words I'm intending to say, or sometimes I'll have long, silent conversations with myself. It wasn't until recently that I learned that not everybody does this.

Anyway, over the last year I've realized that I have a gray patch at the front of my brain that I can't see through or around. It's always there now, and on days when my fog is stronger, that spot gets larger. It's disturbing, because I know it's a sign that my mind isn't working properly any more, and I wonder how much worse it's going to get and how soon.

It's such a frustrating and helpless feeling. Scary. I'm used to slurred speech and general forgetfulness. This complete feeling of just a big blank where a memory should be, is the most frightening feeling of all. I'm sorry you are experiencing this, too.

[NoraS]

I've dealt with it repeatedly, but generally only when I'm in a relapse or extremely tired. Several years ago, I had issues with it for 9 months, then it just suddenly got better.

I'm one of those people who always pictures things in my head, either actual pictures of what I'm thinking about or just the words I'm intending to say, or sometimes I'll have long, silent conversations with myself. It wasn't until recently that I learned that not everybody does this.

Anyway, over the last year I've realized that I have a gray patch at the front of my brain that I can't see through or around. It's always there now, and on days when my fog is stronger, that spot gets larger. It's disturbing, because I know it's a sign that my mind isn't working properly any more, and I wonder how much worse it's going to get and how soon.