Hello all,
I have recently been diagnosed with MS. I am unsure what type as MS nurse says they need to watch and see. In any case, I think my major problem with this disease is cognitive dysfunction. I have problem remembering people and places, I have very reduced attention span and I have problems with my thought processes - in that I can’t grasp the thought in its entirety though I have a strange feeling that I can imagine the thought but it remains elusive. Hope that makes sense to someone. I am convinced that my main problem with MS is cognitive rather than physical. I do have a deficit in my left side, with constant pain in my shoulder. However this does not bother me as much as the problems with cognition. Does anyone have these symptoms? .
Lord, yes. And that is exactly the feeling I get when I can’t remember the word for something too - accompanied by a rather sickening, vertiginous feeling, as if my poor brain has lost its balance and its purchase on solid ground and is tumbling backwards through space. Horrid.
Nothing to do but grin and bear it, I’m afraid. MS is like getting old rather early in all sorts of ways, and I agree that the physical effects are somehow less of an assault on the self than are the cognitive ones. 'Tis a pisser, and no mistake!
Alison
Yes definitely where I struggle most. I have given up on a pyschology home study course as I was wasting my time, thoroughly depressing…
Same here, the physical side isn’t really bothering me. I’m trying to do more exercise to help there. It’s the physiology & emotional side that really bothers me
I have to say that I am happy that I have found this forum. Had so many question that a busy MS nurse couldn’t find the time to answer.
Glad to know that I am not alone in the cognitive dysfuction morass. Felt a bit of a tool when communicating with people. At the risk of sounding stupid, I thought it was unique to me. Haziebabie, I too am in the middle of studies and am finding it ever so difficult. This is the second masters I am attempting and I fear that I won’t finish it because of the cognitive issues. Damn you MS!
I have another question - this one regarding gait. I find my gait is deteriorating rapidly. In a matter of a few months I have found that I am bumping into things more and finding it hard stand upright without swaying. Did anyone have this problem as well, and how fast did it progress? I am still trying to find out where on the scale of MS I am. I suspect that I am not the relapsing/remitting type. As I am newly diagnosed they are still waiting to see.
Alison, You capture it exactly. I shall borrow your phrases when trying to explain to people. I get tired of dealing with the tortuous looks on people’s faces when trying to explain something.
I am having to deal with some degree of shame attached to cognitive dysfunction. Much of my identity is attached to being intellectually capable and seeing this go is excrutiating
Alison, You capture it exactly. I shall borrow your phrases when trying to explain to people. I get tired of dealing with the tortuous looks on people’s faces when trying to explain something.
I am having to deal with some degree of shame attached to cognitive dysfunction. Much of my identity is attached to being intellectually capable and seeing this go is excrutiating
I have been experiencing the same problems myself of late it gets so frustrating when you know what you want to say but the words just don’t seem to be there and when the conversation is over the words just pop back into my mind I’ve actually started butting in when someone else is talking because I’ve got the words in my mind because I know I won’t remember what to say when it’s appropriate.
Many of us (me included) get help from physiotherapists about this one, and the main thing seems to be strengthening the core muscles to help give more core stability - Pilates-type exercises, chiefly. Trying to get the limbs to move independently is all part of it, instead of the old MS drunken sailor walk in which the whole trunk is involved in swinging the leg round and forward. And it can help with holding oneself more stably in space too, and helps avoid the careering offcourse and into things business. None of it repairs permanent neuro damage, obviously, but it’s all about making best use of what still works, and managing the ever-present risk of falling over.
Alison
Hi Jujugumdrops, Sorry to hear about your cognitive woes. I know exactly where you’re coming from though I suspect the debilitating fatigue I was feeling at the time, was a significant contributor to my thought processes and processing difficulties. I was diagnosed RRMS just over 2 years ago and have struggled with a rapid succession of symptoms since then, so buckle down and ecpect it to get worse before it gets better. My general advice for happiness - low expectations 
My fatigue (I was convinced my life was as good as over for about 8 months) responded very well to Copaxone (I would recommend this over the interferons if you get the offer of a DMD in the future, though there are new oral ones now which I have no experience/particular knowledge of) and although I feel I still do struggle cognitively, it is only occasionally and usually PMT related! As is my want, I researched potential pharmaceutical support and this led me in to the fascinating world of nootropics. Modafinil is a good prescription one - only licensed for narcolepsy but has historically been prescribed for fatigue in MS. Though if you want to get the GP on side to prescribe it, it’s important to stress that you struggle mostly with excessive sleepiness rather than ‘fatigue’ as such. There are various mind/brain support supplements you can get, Amazon’s a good place to start! But if you spend some time consulting with Dr Google, you’ll find a range of specialist companies too. There were a couple that helped me enormously in terms of boosting and focusing the old grey-matter. Got me through a work day anyway. So, chin-up soldier - if it’s broke, there will almost certainly be something, somewhere, that’ll help. Even 600mg of aspirin every (work) morning after breakfast made a noticeable difference for me! Ooo, and Berocca Boost - fine fizziness indeed. Please feel free to ask for any more info/opinions (!) - things that work for one person won’t necessarily work for another so don’t lose hope if you try one or two things to no avail 
Best wishes…
Ah yes, and the balance/mobility issues - as Alison says, Pilates or yoga or other core strengthener exercises can help enormously. I’m going to start a class a-a-a-any day now… 
Again, my balance has improved over the past couple of years; I imagine (though I might be totally wrong) that it might be a bit like recovering from a mini-stroke/minor brain damage and your brain can re-learn some movement/responses. I think that’s also where Pilates/yoga can help - concentrating on making and holding shapes can help a lot with improving proprioception which in turn improves general movement.
Dr-F. Thank you so much for the wonderful suggestions. I think I will get the Neurologist and MS nurse onto Modafinil. I will start there, if that doesn’t work then I will try with the primary care physician.
I am on an interferon (Avonex) and I believe that the symptoms have increased since starting this a few weeks ago. I went on medication a week after diagnosis and have been feeling pretty bad since. Of course, I will speak to the MS nurse about switching to Copaxone. I chose the avonex because I only needed to administer it once per week. My lack of trust in my memory was the motivation behnd the choice.
Can you tell me what worked for you regarding the focusing? I have to finish my thesis soon but am finding it extremely difficult and have (hopefully temporarily) given up out of frustration.
Dr-F. Thank you so much for the wonderful suggestions. I think I will get the Neurologist and MS nurse onto Modafinil. I will start there, if that doesn’t work then I will try with the primary care physician.
I am on an interferon (Avonex) and I believe that the symptoms have increased since starting this a few weeks ago. I went on medication a week after diagnosis and have been feeling pretty bad since. Of course, I will speak to the MS nurse about switching to Copaxone. I chose the avonex because I only needed to administer it once per week. My lack of trust in my memory was the motivation behnd the choice.
Can you tell me what worked for you regarding the focusing? I have to finish my thesis soon but am finding it extremely difficult and have (hopefully temporarily) given up out of frustration.
Just wanted to get back on to thank all of you that have taken the time to assauge my fears and to welcoming me. It has meant a great deal. I am in a foreign country (Sweden) for two years, got diagnosed with this awful disease, with no family and felt completely at sea. As my field is psychology I knew that being understood is essential to healing, however there is a significant difference in knowing it intellectually and experiencing it. Thank you very much.
The nootropic specific supplements I found that worked best for me were Optineuro (Amazon) and Neurostim (Google for website). Natural supplements; maca, gotu kola, rhodiola rosea But modafinil, if it works for you, is brilliant for mental alertness and focus. Ever so sadly, it does nothing for me anymore, but it is a very specific ‘wakefulness promoter’ and doesn’t have the broad range of troublesome side-effects associated with amphetamine-type stimulants. The MS community (nurses etc.) aren’t keen on prescribing it anymore, so its best to do your research and go armed with a good case for why they should prescribe it for you. Mentioning ‘quality of life’ and how it has been almost obliterated by your brain’s permanent sleepy-state is a good plan, and take a few documents along to back up your arguments. Eg: Modafinil in treatment of fatigue in multiple sclerosis | SpringerLink http://ijmsc.org/doi/abs/10.7224/1537-2073-10.1.1 Multiple Sclerosis Research: Modafinil and Progression
One thing I would add on the cognitive foul-up front is that there is a difference between the permanent structural damage that MS does over time, and the temporary mayhem caused by (for instance) the shock of sudden illness and a life-changing dx. Not that a student of psychology needs reminding of this, but I’ll say it anyway! Please do not assume that the cognitive problems that you are having now are permanent… You have had an awful shock, and are having a rough time. Whether the dx was MS or something else, you wouldn’t be feeling great right now, and that all takes its toll on how you are functioning, cognitiviely and every other way. Give that shock time to pass, and then see what you’re left with before assuming that the trouble you are having concentrating on your academic work is here to stay. Some things get better. That applies to MS, but it applies to other things too. Please try to take heart from this.
Alison
I just wanted to add my two-penny worth on Modafinil and on balance. Just wanted to reiterate the brain functioning benefits that people have seen from this drug. But make sure you’re asking for it to combat excessive sleepiness - that’s the only thing the doctors are meant to prescribe it for, for people with MS.
On gait and balance, someone recommended the following exercise on here some months ago. Stand in the corner, not touching the walls, with your feet close together. Count down from a number of your choice in threes. I started on 100 and now go down from 200. It makes a big difference to how good my balance is, as long as I do it every day.
Finally, there has been research showing that doing ‘intensive exercise’ (walking or cycling in the study) has lots of benefits for people with MS. I have cycled since diagnosis (15 years ago) and still do this when I can, but am not up to cycling every day any more. I now try to go on an elliptical (sp?) machine every day. Again, to quote from someone on this forum, exercise won’t stop you deteriorating but it will slow down the rate at which you deterioate (and probably lift your mood).
I just wanted to add my two-penny worth on Modafinil and on balance. Just wanted to reiterate the brain functioning benefits that people have seen from this drug. But make sure you’re asking for it to combat excessive sleepiness - that’s the only thing the doctors are meant to prescribe it for, for people with MS.
On gait and balance, someone recommended the following exercise on here some months ago. Stand in the corner, not touching the walls, with your feet close together. Count down from a number of your choice in threes. I started on 100 and now go down from 200. It makes a big difference to how good my balance is, as long as I do it every day.
Finally, there has been research showing that doing ‘intensive exercise’ (walking or cycling in the study) has lots of benefits for people with MS. I have cycled since diagnosis (15 years ago) and still do this when I can, but am not up to cycling every day any more. I now try to go on an elliptical (sp?) machine every day. Again, to quote from someone on this forum, exercise won’t stop you deteriorating but it will slow down the rate at which you deteriorate (and probably lift your mood).
Thanks again for the info. I am lucky to be in a bike city - which encourages daily biking. I have certainly noticed the difference since I have started riding.
cognitive problems and how to explain them
“my train of thought hasn’t left the station yet”
“my train of thought has been derailed” (when someone interrupts and you cant remember what you were saying 2 minutes ago.
there are more but my train of thought has broken down.
carole x