MS cognitive and not physical

[Thinkimjob]

Hello, JAH0513,

You have all my sympathy.

The trouble is the dmds are currently the best (the only) thing doctors have to offer. The fact there is nothing better used to drive me wild, but it's just the way things are at this point in medicine.

I know neurologists can be infuriating. Half of that for me was wanting to shoot the messenger. The other half was feeling pressured to do something I didn't want to do, and being treated like I was stupid.

You can look at diet, vitamins, supplements etc, too.

The dmds don't/ can't target different areas of your brain or spine. They just have a go at slowing all of it down. I'm not convinced they do all that much in terms of progression, either cognitive or physical.

I completely agree with what Mark said about MS being dormant, not benign. I was fine on all counts for 10 years. No more.

[Toomnyhats]

My main sx are cognition & vision, although I do have some physical sx that are mild (but still progressing-worse than they were a year ago).

At this time, my mobility is not affected if I don't overheat or try to do too much.

[Dsdickinson]

lesser of 2 evils

I am not sure which is the lesser of the 2 evils if there can be between cognition disability and physical disability. At the age of 48, being told I have significant memory issues is disturbing. I am filing for disability.

[PsyDreamin]

I understand completely. Really I do.

I have been contending with MS for probably 15 years or so (Optic neuritis 13 years ago; clinically diagnosed 2 years ago) and although I do have a LONG list of physical symptoms the majority of my problems are related to cognition, executive function, attention, and memory.

I work out in the yard, ride motorcycles, take walks, exercise, etc. but am really no longer able to enjoy things like reading. I just can't concentrate long enough to do it.

I still work full-time in a profession that demands attention to detail, analytic thought, crazy multi-tasking, and lots and lots of data and spreadsheets. Lately my job performance has been suffering and I was recently even subjected to a negative performance write-up. If my cognitive decline continues I may very well find myself out of a job - - or at least trying to utilize my long-term disability insurance.

Sorry. Didn't mean to hijack your post

I guess I just wanted you to know that you are not alone.

[Dsdickinson]

That is me!

I was dx a couple of months ago because of my significant memory issues based on the testing I did. I do not have physical symptoms. I had a consult with my doctor and we talked about copaxone. I asked him what he thought about me starting it and I was fully expecting to hear him say that he would not state his opinion that it was my choice but nope, he flat out said, if I were you, I would start it. So I did. I am still kind of numb because of my dx but after doing a lot of reading, cognition is a main player of M.S. there are a lot of articles substantiating.

[SNOOPY]

JAH0513,

You might consider seeing an Occupation Therapist (OT) for help with the cognitive problems.

If you don't start on their drug therapy they suggest they drop you without any hesitation.

That is not necessarily true. If this has been your experience with a neuro then it's time to find a new one.

I have never used a DMD and my neuro has not even suggested he would not treat me. I have been with the same neuro for 28 years.

[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.

[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?

[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. **

[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.

[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

[MarkLavelle]

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

[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.

[journeyman]

OOOOOpppps.

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

[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"