Cognition

By Melanie Saturday, July 18, 2009

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Hi! First time on board. Have to admit I tried to deny I had MS, so never got involved in a community.

Recently had neuropsyc tests which indicate my cognitive skills (short term memory and processing) have dropped considerably. We have no way of knowing if this will continue. My husband and I are trying to make plans for the future, guardianship etc. I'm 51 and have applied for disability. Used to be a Speech Pathologist. (irony).

I can't take meds because my liver has been damaged (by Copaxone or Rebif)

Anyone know the worst case scenero for cognitive dysfunction in MS? How bad can it get?

Comments (14) | Add comment

Lisa Emrich, Health Guide

7/18/09 11:19am

Hi Melanie,

I just wanted to welcome you to MS Central. This is a great little community with members who are genuinely supportive of each other. I do not have a concrete answer to your question, but have read accounts of MSers with a wide variety of cognitive dysfunction. It is never the same between any two individuals. It's wonderful that you and your husband are making plans now for the future. Good job. I wish you well and hope that you enjoy the weekend.

7/18/09 2:08pm

I'm sorry to hear about your cognitive problems, I think I do understand where you're coming from. I'm not yet diagnosed with MS, but that's what the doctors are focusing on. I also underwent neurocognitive testing recently and it showed some distinct deficits in some areas. For me it was mostly short-term memory, word-finding, and coordination/manipulation skills that are the problem.

Your question implies that you believe your cognitive problems are going to continue to get worse. This disease is so unpredictable that I wouldn't automatically make that assumption. You may level out or even improve a little with time. My thinking seems to go in cycles. I have a few bad weeks followed by a few good weeks. Sometimes the bad times make me depressed which results in more thinking problems and a downward spiral. Right now I'm doing well, but seem to be stuttering and having trouble with verbalizing my thoughts again, so maybe I'm starting the next downward trend. (I hope not.)

Take Care,

Melanie

7/18/09 10:29pm

KJ, You make a good point. I am assuming it will continue to decline. I've been in denial so long that now I'm swinging to the other side, doom and gloom! Thank you for opening my eyes.

I'm sorry about your limbo world. It's a nasty place to be. I was actually glad to finally have a diagnosis, if just to prove I wasn't crazy. I hope you don't have MS but I hope they get to the bottom of your health asap.

Thanks for the "half full" comment.

good luck.

Sherry O

10/11/09 8:07pm

Hi Melanie,

I can relate to your thoughts so much initially, I had fun with the dementia-like symptoms that were driving my teenage sons a little crazy! Having been a Case Manager, for seniors and persons with disabilities; making assessments of living environment and having a staff of 25-30 to provide services of care of the environment. The mission of the agency I worked for was to assist seniors and disabed persons to stay ib their homes safetly. Personal care was referred to appropriate agencies. I loved my clients with dementia and the challenges they provided. My children didn't see the fun of the challenge. When my eldest began yelling, "I've already told you that 4 or 5 times." I suggested that instead of yelling at me, put those honour roll brains together and come up with a solution. We came up with the idea of hanging a fairly large white board in the kitchen. When someone relates info I need to remember, they are to put the date related, said it and all info they need me to remember; eg. Oct 7/'09 - Liam - I have jazz band practice every Tues. after school. Long term committments are to be added to calendar, It is most helpful but, the ideal help for me is working with someone who helps me stay focused and doing so in a non=judmental and patient manner.

My memory was one of my greatest gifts. It truly is my greatest challenge to keep up my hope. I live off my long-term memory & a white board,: what happens when my long-term memory is no longer relevant? I try not too dwell on it and,, work at activities that will help down the road. It has taken over 1/2 hr. to type this which is why I haven't been commentin g for q while. Your post struck a chord.

SherryO

tellnhelen

7/18/09 10:02pm

Welcome aboard. I hope you find our site supportive. I am responding in hopes of relieving some of the stress in your message. I agree with KJ; you stillhave a chance to at least level out. Don't give up. I tried to deny IT too. It's a good bet that many of us did the same. Well one or two broken bones later (whose counting) I could not deny it any longer. I decided that I'd better get busy fighting this thing. At least "slow the roll". Although the meds are not for you, there are other things you might consider like vitamins, exercise and diet. There's a lot of information on the web. Personally I feel better researching alternatives for my situation. Maybe you will consider doing the same.

I really learn alot from others here and like to send support from time to time. (It takes me away from my problems.) Good Luck

Melanie

7/18/09 10:32pm

thanks! this is a great site, I'm glad I discovered it. I'm going to see a new neurologist that might be able to suggest new treatments I can tolerate. I'm not a quitter, quite stubborn my husband says. (I would disagree vigorously!). I just don't want to be a burden and I don't want to lose what I still have. (stomping feet).

tellnhelen

7/18/09 10:35pm

who's the cute kid?

Melanie

7/19/09 10:57am

That's me as a little girl. Thanks!

Merely Me, Health Guide

7/20/09 10:19pm

I hear you about trying to deny the MS. I am right there with you. It is a really hard thing to accept for sure. I am so sorry about the cognitive skills...it is so hard to predict what will happen with this disease. Can you tell us more about the liver damage? Does that ever...heal or...what happens with that?

I am glad you are here...there are super nice people here and tons of support. Sometimes I feel helpless except to say...yes MS sucks. This is a bully of a disease.

I am hoping that your symptoms do not progress any more.

Thanks for sharing your story here.

Julie

7/21/09 11:35am

Hi Melanie:

I was diagnosed six years ago and cognition can be a major issue for me. I've had two neuropsych tests done because of thinking/processing/memory issues. The last one was scary -- processing was down to 19 percent of normal, executive function and verbal recall low. My dr said I wouldn't be able to handle my current job anymore.

But guess what? A year later, I'm still in my job and last year I published a book. I am limited in certain ways and avoid putting myself into stressful situations that make everything worse. I am careful not to get tired or to push deadlines until late in the day when I know my cognitive issues will be worse. (Worse = not being able to understand speech, unable to comprehend stop signs. I can spiral downhill terribly if I don't take care of myself.) I rest, eat well, avoid stress and put myself first -- this makes a world of difference.

Like someone else said here, my cognitive issues sort of ebb and flow. I never feel back to 'normal' but there are definitely days when I know the brain is working a little more smoothly.

I really do believe you have to keep exercising your brain and that will help functionality as long as possible. I may test low but I function high. I haven't read anything that leads me to believe my cognition issues are doomed to get worse.

Take care.

Lena

8/11/09 12:30pm

Hi Melanie !!!

Well like you I have had this condition for I would say at least 10 years so far and let me tell you that it is very challenging. Mine is quite strong and the only thing that helps me at the moment is giving yourself clues in all sorts of ways around the house that is right in your face written down. I started off with stickies (coloured) around where ever I was walking in the house then moved onto a list of daily activities on the kitchen table. This is the only way I can at least control it some but it is a different world than when a limbs goes out on you. Just be prepared that there will not be any warning before a sympton happens, like when a physical problem goes out on you, lapses at least last for a day and then some. I hope that yours turns out mild.

Zann

8/20/09 6:10pm

Melanie -

I started having issues with cognition about 10 years ago. It comes and goes, heat and stress definitely make things worse. I feel I am much more stable now that my neuro is prescribing vit. d supplement - in large doses, to keep my levels high (around 50, 30 is normal). But I don't know if it is the vit. d, or if I am just going through a good patch! Ask your neurologist about it, it may be worth a try.

Good Luck.

Zann

Barbara

10/13/09 6:59pm

Hello and please hang in there...your mind can actually improve if you work on it. I have been diagnosed with MS for 8 years and my memory went downhill fast but I started reading more and spending more time doing word puzzles...especially crosswords. I truly believe that I have lost much of my brain function but I have strengthened what is left.

The same is true with my muscles...work on building what you have left.

Have faith in yourself.

Barbara

Anonymous

12/22/09 1:15pm

That is the answer I was looking for. I got disabled in 2002 due to cognitive deficits. It could no longer work because I couldn't remember short term things or process correctly. I had m.s. since 1985 and was always able to work. But what do you do when it takes your mind away.

Cognition

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