I've read where CI can occur early in the disease process, no big surprise , even in RIS and CIS.
I suffer from CI.
I have working memory issues and I'm still in Limbo land after all these years.. 2008 was my first MRI
I completed NeuroPhy testing Nov 2011.. I 've talked to the Dr this past July and he wants to retest in another year and half, since a baseline test has been established.
here's what I've found.
Effects of DMTs on CI
Theoretically, DMTs could impede progression of CI by preventing new cerebral lesions and reducing brain atrophy. Preliminary data suggest that DMTs may have beneficial effects with regard to cognition, but most studies to date have either included cognition as a secondary or tertiary endpoint or were small and uncontrolled. None of the trials provide comparative data to know whether any one DMT has greater effects on cognition than another.
The Impact of Cognitive Impairment in MS
Cognitive impairment (CI) affects 43% to 70% of patients with multiple sclerosis (MS) and contributes significantly to disability. MS patients with CI are less involved in social and leisure activities, have difficulty performing routine daily tasks, and are at increased risk for psychiatric illness compared with patients who have physical disability only. CI is a major contributor to the high rate of unemployment among individuals with MS,2-4 and increases the risk of poor psychosocial, physical, and overall health-related quality of life (QOL). Cognitive domains most commonly affected in MS
the two above paragraphs are from Living Medical E textbook
THis week I'll have yet another brain MRI and follow up visit with the MSlogoist. I have mixed emotions about starting DMD'S if offered or even if I would request starting DMD'S.. I been here a few years now and have learned so much and feel empowered as a result.
Can Anyone out relate to this?
Whats your thoughts about starting DMD'S to keep CI at bay?
When I was diagnosed with MS, it was 2007. I was in a flare, and I had a couple more that year. It took me a long time to recover. Afterwards, I could tell that my brain wasn't working right.
I sought out and got a neuro-psych exam, and it showed mild cognitive impairment. Which apparently isn't that big of a deal, but the real analysis was in the psychiatrist's report, which said I had some specific deficits.
I went to my neurologist and asked for a sample of Aricept. I couldn't shake this gray fog that I had to think my way through every day. While they say that Aricept doesn't address the condition that causes cognitive impairment, I certainly felt like I could think better. I was able to put two and two together, follow directions, do simple math... vast improvement from my previous state of idiocy. I was on Aricept until I began to see actual cognitive improvement without the medication. It took about six months.
I took Copaxone for three years, until the side effects started to be a problem. But I never perceived a rapid improvement in my thinking from the Copaxone.
Two things I did that really helped was simple exercise and box-popping games. Bejeweled, Big Kahuna Reef, Tetris... I played them all, at first very poorly, then as I could track better, I got better scores.
I also began learning a musical instrument. If I had allowed myself to think about it, perhaps I wouldn't have chosen the upright bass. Hand strength, standing weakness, cognitive problems - all this added up to be serious obstacles. But I think that learning helped my brain grow and change, and perhaps find another path through the damaged areas.
As an adult, I can look back on my life and think of times I seemed 'dumber' or less able to track what was going on. I also can remember when I seemed smarter, too. I don't know if these periods are times when cognitive impairment was in play, but I can't explain these alternating periods of dumb to smart.
I hate to be so brief on such an important topic, but nothing I've managed to type out seems to say what I want. Because I want to say is the bottom line and that is.... Don't hesitate if offered. Get on a DMD asap JB. The CI doesn't wax and wane like varying symptoms do.
Not saying it doesn't wax and wane at all. Just know for a fact that despite the variations and degrees of it, it declines for those of us that have it.
Khan Academy is amazing - I am thinking about doing astrophysics or something else really challenging through them. Just kidding, but maybe I could finally do a serious math class again. I could use an Algebra refresher. It is an amazing resource for parents who feel lost helping their kids.
As for the DMD for CI - at this point you need to be asking for it at this next appt. You have waited long enough. More than long enough. There are some studies being done now looking at CI and the DMDs, or at least one for Tysabri. right now its anecdotal it helps, but those tales are very convincing.
Ok if you guys really like Khan academy then your really going to like this one and if you do register for course(s) you get a certificate of completion, they are mainly USA universities providing 'free' online courses and the topics are pretty cool..... https://www.coursera.org
As for cognitive impairments, you're going to find that a lot of the research on this is quite recent, it was only very resently that CI was officially recognised as a bonafide sx of MS. With the research specifically looking at CI and MS, quite a few 'incorrect' theories have now been disproved. It isn't rare as it once was presumed, its as common as the visual sx's. It isn't something that happens late in the disease course as once thought but its looking to be an early sx, though i think thats going to be difficult to determine unless cognitive assessments become as standardised as the MRI.
Q1: Can Anyone out relate to this?
A: not sure what your refering to but i'll assume CI, yes in a big way.
Q2: Whats your thoughts about starting DMD'S to keep CI at bay?
A: DMD's to just specifically keep CI at bay, i dont think thats going to happen due to the unpredicatability of lesion developement, location and lesions that are not visible on MRI or no longer visible on MRI etc. What we do know is that DMD's if they work for you, can reduce the number of relapses and slow it down but lesions are 'still' developing even if your on a DMD and the research proves that to be true, thats even when an MRI doesnt show any new active lesions.
Theoretically it should help, lets say a person has a 1000 lesions in various locations and none are in any areas that will specifically effect their cognitive abilities, but they still have cognitive imparements despite their lesion location. Its not necessarily an individual lesion but the collective, lesions that cause gray matter shrinkage, lesions can become black holes which is currently the known causation of brain shrinkages in MS and that is also a known causation of cognitive issues. So slow down the disease, reduce the number of lesions and theoretically the DMD's will reduce the level of CI a person has, possibily!
Q3: Does CI impact you?
PS hope that all made sense, if not please forgive due to my brain being out to lunch lol
I also have cognitive impairment. I had a neuro-psych exam back in Jan 2011 at the University. It showed that I had deficts in certain areas. My current neuro doesn't believe in sending anyone for those types of tests, because I think she says it's automatically to be expected with someone that has MS.
I started to notice my deficits after I started Copaxone - so I can't say that Copaxone has helped with that or not.
I wonder what your next brain MRI is going to show? Let us know what they say....
Hi John, I´m also still in limbo and I'm think I have CI. I used to multitask a lot, now I can't, also I have to reread the newspaper sometimes many times per page. Memory is not so good.
But one thing I would like to know if any of you recognize, I get a strange ideas out of the blue. I´m lucky enough to be able to stop myself. My worst was when I was holding my six months old grandson, and it pop´d in my head that maybe I should stop holding him (put my hands down).
Then he would have fall´d on the floor! I am SO ashamed of this, that I have never told anyone. I of course love him SO much, that I would die if something happened to him. Once I was driving and got a crazy idea. This scares me, but it has not happened for awhile now.
I really hope you get help with this John,
The progression of CI is my biggest concern, and my biggest fear.
It concerns me also with my ability to be able to still make a living as a self-employed general contractor and had been working for somebody else during this time no doubt my mind I would've been terminated for the mistakes I've made.
So if the opportunity does present itself to slow down the progression of CI, I'm throughly in favor of it, if the doctor does finally offer this to me.
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