MS cognitive and not physical

[JAH0513]

I know that MS is different for everyone but I am tired of not having any information about the cognitive side of MS. I was officially diagnosed 10 years ago when I had a problem with my eyes and was dizzy for several weeks. I had optic neuritis 10 years before that but MS was never mentioned. My first neurologist said my MS was benign and I didn't need to start any drug therapy. I thought because it was benign that I wouldn't have to worry about it and was basically in denial that I even had MS. I have never had any physical problems but an occasional sensory issue like losing taste, smell, cognitive problems, depression and dizziness. I am so frustrated that I feel like my MS isn't even recognized and I am ready to just say I don't have it and accept that I will have to deal with my cognitive problems all by myself. I have never been on drug therapy and I wonder why I have never had any physical problems.
My last MRI was reported that I had many issues that lead to cognitive problems. I know that my cognitive problems are getting worse. All the drug therapies all say they are for physical problems not cognitive problems so is it even worth the effort to do drug therapy. I read in one of my MS books that I have for research that "the common definition of benign MS as first manifesting, then not showing any more progression, researchers have found unacknowledged loss in cognitive functions rather than the physical symptoms that mark the disease's continued destruction." I don't know if my MS is what is causing me to "lose my mind" or if it is something else. I have been told that my MS is progressing and my cognition seems to continually gets worse. I am tired of trying to find any answers but everything is about physical problems. Nobody can see that my mind doesn't work like it used to and I can't remember things that used to be so normal.
Does anyone else have only cognitive problems?

[22cyclist]

I don't have only cognitive problems, and it sounds like neither do you. If you have had problems with your eyes, dizziness problems. What you need to do is get a referral to a neuropsychiatrist for what is known as neuropsychological testing. It tells the tester how many and how severe your cognitive problems are, and if they are related to MS. There are medications to help with cognitive problems as well as fatigue. One is amantidine. It helps you pay attention, stay awake and not be so foggy.

I would also once again ask for a DMD to stop the MS from advancing. Or, at least slow it down. You may have a benign course, but that doesn't mean you don't have the right to treatment.

Call your neurologist with those requests.
Let us know how it goes.
Lisa
Moderation Team

[mjan]

Yessss!!! I know how you feel. Not much research goes into cognitive issues and even the two neurpsych evals do not quite measure the struggle. It has cost me my job, my career that I loved, my change in income and all my coworkers who were my friends.

Hope you know how I understand!

Warmly, Jan

[MSer102]

I put "cognitive impairment and multiple sclerosis" into my google search box and it came back with 869,000 results. So it sounds like there's a lot of information out there about MS and cognitive impairment. Maybe you just haven't been looking the the right places?

Nerve damage is nerve damage. Just because you have sensory and cognitive problems instead of physical problems doesn't mean you don't have MS and doesn't mean that you won't get a benefit from being on a DMD.

I think you misunderstood what you read about the DMDs. You said "All the drug therapies all say they are for physical problems not cognitive problems." But that's not true. None of them say they're not for cognitive problems. Some of them don't even say that they're supposed to delay physical disability. But the ones that do say that only because that's all they proved to the FDA. If they didn't test cognitive problems they can't say anything about it. But they do all say that they can delay the frequency of clinical exacerbations. That includes sensory relapses and cognitive relapses - any kind of MS relapse that can be tested clinically.

It sounds like your neuro calling your MS benign got you started thinking in the wrong direction? I don't understand what you mean when you said that you feel like your MS isn't even recognized yet you've been told that your MS is progressing. If your doctor said its progressing then he has to be recognizing it. And if your doctor says its progressing then now sounds like a good time to talk about getting on a DMD.

[SNOOPY]

JAH0513,

I really hate it when a neuro uses the term "benign" when discussing MS. MS is only benign until it isn't. MS is a progressive disease.

Cognitive Dysfunction can be a direct result of MS (lesions affecting certain areas of the brain). Cognitive Dysfunction can also be caused by stress, anxiety, medications, depression and fatigue.

If some of those other causes (depression, fatigue, stress, medications) are dealt with it is possible for cognitive function to improve.

A Neuropsych evaluation/testing is a good idea. It would allow you to know what, if any, problems you may have with cognitive function.

My personal experience with NeuroPsych testing/evaluation disproved the concept that testing/evaluation can tell you specifically what is causing the problem.

I am at a high risk for cognitive dysfunction but the Neuropsych and the testing could not tell me which health issue (PTSD/anxiety/panic attacks, sleep apnea, ADD, MS) was causing the issues found and observed.

I was taking a medication which caused excessive cognitive dysfunction but when that medication was stopped cognitive function improved to what I consider normal for me.

Information about Cognitive Dysfunction:
http://www.nationalmssociety.org/abo...ion/index.aspx

[JAH0513]

Jan,
Thank you for understanding. I just reached out to see if anyone else is seeing themselves slip away. Raising three children multi-tasking was very routine but now I can only think about and do one thing at a time and that can take all day. I am just grateful that they are all grown and on their own but they have a hard time understanding my cognitive problems. Time seems to be something that doesn't register in my head. Two months ago or yesterday doesn't make any difference in time to me. I am learning to just go slow, keep things simple and stop feeling bad when I can't do what I used to do with no problem.
I know that they are doing more research into the cognitive side of MS but the neurologist I heard speak after he came back from the conference in Europe last year said they are focusing on cognitive issues but it is just in the UK right now.
Janice

[journeyman]

Cognitive issues.

I was dx.ed five years ago. MS is different for everybody. If MS does not manifest itself in the cognitive areas then I must have Alzheimer's. I have tremendous cognitive issues as well as aphasia during my relapses.

Unless I misunderstood your posts, (for which I apologize in advance) my MS is very cognitive as well as physical.
Dave Tampa, Florida
"Journeyman"

[journeyman]

OOOOOpppps.

I do apologize. Sorry. I just re-read the posts. (Jumped the gun.) "cognitive errors/cog-fog!"
Dave

[lstrl]

JAH0513,

I really hate it when a neuro uses the term "benign" when discussing MS. MS is only benign until it isn't. MS is a progressive disease.[/URL]

I was going to say the same exact thing. Due to the nature of MS, you never know when you're going to get hit with another exacerbation. If you could last another 10 years without, then great, but nobody can ever know for sure how things will turn out. We can only hope for the best.

For your neuro to be against using a DMD seems irresponsible to me. When you look at the studies, it's not that they are miracle drugs, but honestly, when you're living with the disease, any delay in progression is worth it, unless you are just suffering from horrible side effects. I know it does seem like the focus is on physical, but a lesion is a lesion. Whether it is physical or cognitive really depends on where it pops up.

I'm completely opposite of what you're going through. To this point, my symptoms have only been physical and nothing cognitive (although I've wondered a bit if I am having some cognitive issues, but I think it's more from the stress of the diagnosis for me). I felt like my drs wouldn't acknowledge my disease either, and it was awful when they would say my symptoms weren't bad. That's so easy to say when you're not the one living with the symptoms. I switched drs until I found someone who would take me seriously. Now he's made managing the disease a top priority. It makes a huge difference because now I don't have the constant worry that my dr will ignore me anymore and I can focus on getting better instead.

I do have to make one more comment about benign MS. What is so benign about it if it popped up in the first place? How does some dr who can't understand the disease feel he's qualified to tell someone that it's benign so there's nothing to worry about? Then you say you've been told it is progressing. I hope he's more willing to work with you now that progression has been documented.

[MarkLavelle]

I also think the idea of "benign" MS is ridiculous. "Dormant" would be closer to the truth...

[tellnhelen]

Hi Mark

I can relate to how you feel also. My mind and cognition is just not what it was. However, I also believe I have a long way to go before senility or anything close to it. Im responding today partly to compliment to writing skill. You don't express yourself like someone who has a problem. Last, thank you for raising this isssue. You can see from the responses that cognition and the lost/reduction of it is important to a lot of people. Including me. Good Luck to you

[GrannyKay]

I'm very new to this .... just had my first visit with a neurologist about 2 weeks ago, and she was the first person to mention MS as a possibility, so I have had my first MRI, Visual Evoked Potential and lumbar puncture and am just waiting for all the results to come back.

I have the same types of issues - eye problems (uveitis) and vertigo.

I also have noticed my memory has gotten very bad. I mentioned that to the neuro and she told me to remember 3 words ... I didn't realize she was going to ask me about them again later in the appointment, but when she did, I could only remember one of them, even after she was giving me hints about them.

My son came over last night and I was showing him something, and then a few minutes later started showing it to him again .... I caught myself and said, "Did I already show that to you?" That type of thing happens to me more and more lately.

The only abnormal thing that has come up on my tests so far that I know of was my MRI showing "enlarged ventricles" in my brain, which can be related to MS, but there were no lesions.

So....all that to say I can relate to what you are going through to some degree anyway. When I saw your symptoms of dizziness and eye problems ... and cognitive problems ... I wanted to share my experience as well, and as you can see many others have had the same experience. You are not alone here.

[JAH0513]

I thank everyone for their thoughts but my question just really shows how MS is so different for everyone. I have been to four different neurologists over the years and all I ever get is yes you have MS and start this drug therapy and then they turn you over to the drug company and you never see them again.

If you don't start on their drug therapy they suggest they drop you without any hesitation. I just would like to have a neurologist take some time to explain my MRI so I can understand more about what MS is doing to me. I decided that neurologists don't understand enough about MS to really know what to do and what the drug therapies can do to each person but only through trial and error.

I have never had a relapse that I am aware of but the MRI shows that my MS is worse now after only two years. I am currently trying a neuropsych which is an hour away but so far I have only spent about 10 minutes with her after waiting for two hours after my appointment.

I have seen my last MRI and the report and I would like someone to explain it to me. Roughly it says I have innumerable hyperintense lesions within the periventricular white matter and when I looked that up it refers to reduced gait speed as well as reduced mental ability. There are also multiple black holes within the periventricular white matter and the right frontal lobe.

I also have diffuse global atrophy which is advanced for my age which means my brain is shrinking. This is enough to scare me but nobody seems to care or understand just accept you have MS and get on drug therapy. I can walk and talk with no problem but I can get lost and not remember someone's name. It is frustrating that things I could do easily once now are harder and takes longer. I can't do anything quick because it just makes me shut down.
I will just keep doing my own research to try and find out what I can do and can't do.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[its2much]

It's painful for me

to concentrate, try to get something done, organize my thoughts, etc. I literally have pain when I try to do something that requires concentrating. Hope you understand what I mean. Anyone else?

[jonarm56]

WOW!!! somebody else with primarily cognitive issue...

Ditto on all your symptoms, and some of the frustration.
10 years of docs saying ms has no cognitive component, all I knew was cognitive impairment. Surfing, snow boarding, sailing and physical activity were no problem.

Wish I had started some treatment years ago. Or been smarter about biology and diet...things like mitochondria...but my early twenties I felt invincible.

I thought if I last ten years without a wheel chair then I've skated past the worst the disease has to offer. All along though experiencing severe cognitive impairment.

After 15 years, I am now starting Disease Modifier. Don't want to lose more than I have to. I was lucky...now I have to think about the next twenty years.