MSers - are you signed up for newsletters from your DMD companies? I am, but also have used other companies websites simply for the variety of information.
I recently received a newsletter from MS Active Source on Cognitive function, and while the info is simple, and states what we experience, the one statement that stood out to me was this
"Whatever tests your neurologist recommends, it's critical to act early — before symptoms can impair your work or daily living. With early diagnosis, you and your doctor can design a treatment strategy that works best for you."
Reason I found this interesting is because I know I've declined cognitively. But, when I've inquired about how important it is to "measure" it, the response I received was moreso along the lines that it's fairly important where filing for disability is concerned but otherwise I didn't get the feel that either doc I've asked was too concerned with measuring me.
How about you? Have any of your docs asked you for a test to measure, to employ a strategy to live with it? Or, did you have to inquire? I guess I want a strategy dag nappid! Because surely I've been feeling the decline for years now.
If you are interested in the link: http://www.msactivesource.com/ms-memory-symptoms.xml
Would love to hear about your cognitive measurement tests and strategies.
Hi Shell. Much like you, I am aware that I have declined cognitively and would LOVE to find access to cognitive testing, but I don't know where to get it.
When I visited the USC MS Center, I asked about it and they said they could do it , but it costs over $1,000. I went up there without a referral, so I would be paying out of pocket. My regular neuro and PCP do not seem to be interested in hooking me up with any care outside of my prescription DMD, and I haven't pushed for any at this point.
Ho hum,... Hopefully I'll find some extra time to advocate for myself in the next couple of years.
I've also mentioned significant cognitive decline several times to my neuro. She has talked about having tests done, but never ordered it. I see her again mid -month, and I'm going to demand it this time!
I've been doing the cognitive testing for the last couple of weeks. At first my neuro rehab specialist thought that I had a lot of problems, but more testing revealed that I am still within the "broad range of normal". However, she also said that I have MS related problems with attention. She thinks that the reason I have such a hard time is because we make "mini memories" of whatever task we are doing- and that this is how we get things done. -Apparently, I have a hard time making these "mini memories", so I get confused when I'm trying to accomplish a task.
I also have trouble with information processing- especially when there is noise around me. Movies with music (especially in the theater, where the music is blasted at you- I leave feeling dizzy and shell-shocked). Too many people talking at once (I sometimes cannot hear what they are saying as language, it sounds like gibberish to me, and it's very disconcerting). Visual "noise", too much going on- this also affects my ability to understand things.
Anyway, we are working on it. I now have a day planner, with lots of room to write everything down. Lots of tabs too, like "READ ME NOW", "To Do", "Today", "This Week", and a two page "Month-At-A-Glance". I am getting used to using it, and it is helping.
I am also trying to take a mental picture of things, so I can picture them where they go, or what I am supposed to do. (Like tonight: I am supposed to make an easy dinner of red beans, rice, and andioulle sausage. I have pictured the preparation, what pot to use, and what the finished dish will look like. I have written down what ingredients I need too. I hope it works...)
I also have trouble with reading and studying. This is not normal for me, I used to find reading and study very easy and soothing. But this has changed over the last couple of years. We are going to tackle this on Monday. We haven't started working on the problems with noise yet. Not sure she can really help me with that. We'll see.
The good news is: As the lesions go away- we may return to normal, or near normal, at least. Then, as new lesions develop, it will depend on the location- whether or not we develop more cognitive difficulty. But if we have the tools we need beforehand,( and learn to make it a routine)- it will help us to manage better in the event we get new lesions in places that cause cognitive dysfunction. (Sorry about all the run-on sentences.)
I know I am declining cognitively! as others do, noises affect my concentration, I can't multi task like I used to (gone are the days when I could juggle 6 ER rooms and still assist in trauma IVs) I need to have one of those tests done too (or maybe I don't want to know how badly)
I often have to read paperbacks 3 times to absorb it all or read the same page 3 times.....I used to speed read....sigh
I too watch some of the other companies newsletters to stay informed
Complaining about a change in my cognitive abilities brought my first exam as a "baseline". If I had recognized and been informed earlier, I would have asked earlier for a neuro-pysch work-up.
Since the only record of my previous IQ and school performance is almost 34 years old and probably accessible at this point, my "expected outcomes " were based on my current title. I know it sounds like I am being a braggart, but my skills and knowledge used to far outweighed my job description. Since this was my only constant; I showed mild deficits but based on my son's current medical condition and treatment it was chalked it all up to 'stress'. (Side comment -men ,present company excluded -Arrrgh!) I asked for the referral in order to save my job. Needless to say, my strategy didn't work.
The following exams were ordered by my neurologist as a yearly comparison. Next up is in August.
Ask our neurologist where the closest neuro-pysch testing is available. . You would like to know as a baseline should anything at work be deemed cognitively lower. Chances are the first exam will show you to be perfectly normal , unless the process has been occurring for a long time.
On the high side you would have a baseline to wprk from. I used my base line to fight for my job but, alas the as$had already made up her mind.
I knew my brain was fried, I am HG (lol was) from a genetic pool of exceptionally to profoundly gifted, started school early and still skipped 2 grades, thats just part of my history and it does make a difference (which i will explain). I was the 'normal' one lol the dumb bunny of the family with the people and verbal skills, the others had missed out on for higher IQ's.
There had been slips prior to the big bang but nothing even close to give me any real heads up, on what was going to happen. Funny but the neuro who was an @$$ scheduled the cognitive testing, i just got a letter in the mail with an appt date with a neuro-psych. I had no intention of missing it, i needed to know but didn't want to know lol I always go with needs over wants even if it kills me ;-) hmmmmm except for shoes lol
I'd already had psych testing at my initiation, my brain was fried and I'd already been working hard for around 4 months so there were improvements. Though I was still well aware there was a looong way to go and finding out how much had been lost to me was going to be difficult but something i still needed to face head on.
No offense to psych's or neuro-psych's but its simply a fact that unless they specialise in gifted, most have never tested people in the top 2-1% or have only tested the odd few, just statistics. Theory vs practise makes a significant difference that shouldn't be overlooked, in my opinion based on gt family and friends experiences, it matters!
End results are still hard to swollow but real so I deal with my loss of 30-45 IQ points which is 2-3 standard deviations (15=1d) and if your unsure what this means, its a 'huge significant' loss. To put it into perspective, there is a bell curve, a range and these tests are all designed and callabrated from the average IQ. The normal or average IQ is 100 with 1 standard deviation either side, so the average range 85-100-115 (low normal - normal - high normal) and its where most of the population fall into.
You need to also understand that to formulate these numbers, all the results of each individual component test is tabulated together, so thats the highs, lows and middles added together and averaged out. Its not so much the end number that tells the story, whats 'more' important are the below normals or the lows. The lows pull down your end score and can make that end number practically meaningless eg
Jane Doe's end score is 100 so she's perfectly normal right, errrr wrong because her highest scores counter balance her lowest scores, they equal each other out and what you end up with is a pefectly average or normal IQ score. Jane Doe still can't remember simple things she could before, and its self evident when the individual components are seperated, her lowest scores are well below average and pin point the issue.
Lol this is my world, my head is filled with info on this and similar topics lol I was set up to go back and get my psych-teaching degree and then the big bang changed my plans lol such is life. I know with out any doubt that i'm lucky, damb lucky to have had those exta points in the first place, if i'd been perfecly average to start with, i'd be in a heck of a lot more trouble than I am now. I'm also lucky to have 20+ years of working with disabled children, so i have tricks lol
So if your wondering if you should get tested, just believe those of us that have done it, get tested, get a base line so if things do go south the evidence is there so you can get help with your cognitive issues.
When I thought there was a hole in my marble bag I went to a neuro-psychologist. I went through a pretty sizable battery of tests over the course of 3-4 hours. There was good news and bad news. The good news was that my cognitive function was "average". The bad news was that my cognitive function was "average" :-) My parents had higher expectations!
I now have a baseline. Should things seem to start deteriorating I can be retested and the results can be compared.
I do think it would be helpful to get a baseline even if you have begun to see a drop off in cognitive function. As new meds become available, and existing meds improve, I think it's important to be able to monitor all aspects of our disease.
I've had increasing concerns over the past couple of years about my declining ability to concentrate and stay focused. Like some of you I used to read a lot. I could have several different books on the go, usually a novel, a memoir, something political, and flip back and forth and not miss a beat. Now it takes me ages just to read one at a time. Mostly I read medical journals now, 90% of which would have been over my head at the best of times. I still have my Vanity Fair subscription, but no longer read it cover to cover as I used to do, usually over one weekend. I really miss reading. I try but I cannot stay engaged no matter how much I try.
Noise too, yes. Can't stand it, can't stand crowds, last concert was a Metallica show > 4 years ago, not sure I could handle one now.
Also, the word finding is a problem. It can be embarrassing, and this one has probably done more to shake my confidence than anything else related to my MS. I can feel my cheeks burn as I struggle and stammer to convey what I'm trying to say.
I haven't requested an evaluation, though I suppose it would be helpful if there are therapies, drug or otherwise, that might help.
It might also help to sort out whether these various issues are actually caused by the disease process, or some secondary cause such as side effects of meds, response to pain, etc.
I don't know that lesions necessarily need to heal in order to have improvement of cognitive symptoms, or other symptoms for that matter. I'm really interested in neuroplasticity and the possibilities it offers for partial or full recovery of neurological impairments. I think it holds much promise and will be key in developing treatments that will make a real difference for some of us down the road. It is the research in this particular field that makes me most optimistic about the future. Given that, I can see where getting a baseline as early as possible would be useful. OK I've now talked myself into bringing this up with my neuro. thanks Shell :)
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