Lesions and Diagnosing?

[GESSA]

Maybe these are rhetorical questions, but can someone please explain to me why lesions have to be in a specific place and need to happen over time for an MS dx when lesions aren’t correlated with disability level? And why cognitive sx’s don’t count towards “neurological” sx’s indicative of MS when the vast majority of people with MS have cognitive sx’s?

[marti]

My neuro just recently explained the lesion location thing to me, but I can't remember enough to explain it to you. Sorry. Someone here will be able to help you.

[SNOOPY]

Hi GESSA and welcome to MSWorld.

There has been a long standing diagnostic criteria for Multiple Sclerosis, The Revised McDonald Criteria.

Brain lesions can have many causes and are not necessarily indicative of Multiple Sclerosis. MS lesions are caused by Demyelination of the Central Nervous System(CNS) which can cause disability at anytime.

MS is a difficult disease to diagnose as there is no single test, by it's self, that can give a definitive diagnosis. There is also no symptom that is exclusive to this disease. Many other conditions can cause symptoms similar to MS:
https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

Part of the diagnostic criteria requires "time' and "space." From the National Multiple Sclerosis Society:

~ Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

~ Find evidence that the damage occurred at different points in time AND
Rule out all other possible diagnoses

https://www.nationalmssociety.org/Sy.../Diagnosing-MS

Multiple Sclerosis also has a very long history of being misdiagnosed:
https://www.everydayhealth.com/multi...ple-sclerosis/

Hope this gave you a better understanding about diagnosing MS

[pennstater]

Snoopy gave good links to review. My simple understanding:

MS lesions tend to be in certain areas of the brain. So if the lesion is not in one of these areas, MS is usually not the cause. Other than that, lesions can be in any are of the central nervous system.

As for over time, the thought is if only one incident that caused lesions and no other lesions discovered subsequently, then MS is not the cause.

Not sure why you think cognitive symptoms not part of MS symptoms. Both my neuros count it and monitored it. That was actually a symptom that lingered after first relapse when all else resolved. But I had other symptoms during relapse, not just cognitive.

Lesions in the spinal column correlate better to symptoms then the brain. The brain is so complex and it's neuroplasticity properties allow it to compensate for damage sometimes.

[MMMMS]

Two docs diagnosed MS when I had no new lesions after the first MRI. The thinking was that 12 - 20 lesions wouldn't have occurred at the same time.

[502E79]

he vast majority of people with MS have cognitive sx’s?

Is this really true?

[SNOOPY]

Is this really true?

Probably no more so than the other symptoms those of us with this disease deal with. MS fatigue is the most common symptom among those with MS (per my Neurologist).

It's possible for cognitive dysfunction to show in the very early stage of this disease but most common is in the later years, but to say the majority of those with MS have cognitive dysfunction is not correct...in my opinion.

Many things can cause cognitive problems that are not related to MS. If someone with or without MS is concerned the best thing you can do is have a NeuroPsych evaluation/testing.
https://www.med.unc.edu/neurology/di...rs/npsycheval/

I had this evaluation and testing a few years ago. The only thing it found was I had "glitches" which was not due to MS.

[marti]

Probably no more so than the other symptoms those of us with this disease deal with. MS fatigue is the most common symptom among those with MS (per my Neurologist).

It's possible for cognitive dysfunction to show in the very early stage of this disease but most common is in the later years, but to say the majority of those with MS have cognitive dysfunction is not correct...in my opinion.

Many things can cause cognitive problems that are not related to MS. If someone with or without MS is concerned the best thing you can do is have a NeuroPsych evaluation/testing.
https://www.med.unc.edu/neurology/di...rs/npsycheval/

I had this evaluation and testing a few years ago. The only thing it found was I had "glitches" which was not due to MS.

I kind of wonder how many of us had difficulty in school due to cognitive issues.

[SNOOPY]

I kind of wonder how many of us had difficulty in school due to cognitive issues.

That could possibly be due to Attention Deficit Disorder (ADD). I had/have ADD as does my daughter. Mine wasn’t diagnosed for many years. My daughter was diagnosed at the age of 8.

[pennstater]

I kind of wonder how many of us had difficulty in school due to cognitive issues.

Unless pediatric MS, I wouldn't think MS was much a factor.

Fatigue from MS can cause some cognitive symptoms. Lesions in the brain can also cause cognitive symptoms. But not always.

I also recommend neuropsychology testing for anyone concerned about cognitive symptoms. I also think anyone newly diagnosed should get it done as a baseline for the future.

[marti]

That could possibly be due to Attention Deficit Disorder (ADD). I had/have ADD as does my daughter. Mine wasn’t diagnosed for many years. My daughter was diagnosed at the age of 8.

I don't think we knew what ADD was back in the 50's and 60's. Never heard of it until more recent years.

[502E79]

Thanks Snoopy.

At 68 years I actually believe I'm sharper than in earlier years.

Well, maybe not sharper but aware of what is important.

Seems like I've drifted off the "cognitive" issue... Hmmmm...

Jer

[GESSA]

Actually, according to the NMSS, “over 50%” of people with MS have problems with cognition, and I’ve seen other reliable sources (I’m a stickler for that) estimate that as high as 85%, and (according to NMSS), cognitive changes can often be the first symptoms experienced. But that’s not how the medical-industrial complex sees it; again, from the NMSS, “[s]scientific evidence supports early and ongoing cognitive evaluation for people with MS. Despite this, cognitive function is not openly discussed, routinely evaluated or optimally treated. It is one of the major unmet needs in MS care.”

Probably no more so than the other symptoms those of us with this disease deal with. MS fatigue is the most common symptom among those with MS (per my Neurologist).

It's possible for cognitive dysfunction to show in the very early stage of this disease but most common is in the later years, but to say the majority of those with MS have cognitive dysfunction is not correct...in my opinion.

Many things can cause cognitive problems that are not related to MS. If someone with or without MS is concerned the best thing you can do is have a NeuroPsych evaluation/testing.
https://www.med.unc.edu/neurology/di...rs/npsycheval/

I had this evaluation and testing a few years ago. The only thing it found was I had "glitches" which was not due to MS.

[GESSA]

Why I asked...

So, here’s why I asked: I started having symptoms in college in my 20s (late 1980s), when I felt dizzy and nauseous and couldn’t stand up straight. I went to the student health center, and they ran a bunch of blood tests and couldn’t figure out what was wrong.

Fast-forward to 2003, when I was hit with debilitating widespread pain and fatigue, with episodes of not being able to think straight or make sense of auditory and visual stimuli (stimula? I can never remember). First they said I was “just depressed,” then they said I had fibromyalgia.

Then in 2012, I lost all feeling and use of both arms for three days, and I had so much trouble thinking clearly that I thought I was losing my mind. I had a neuropsych eval that found problems in nearly every cognitive issue commonly found in MS and an MRI that showed three T2 lesions in the white matter of my frontal lobes. I was dx’d at that point with “conversion disorder,” which means they decided it was all psychosomatic.

Then, in the summer of 2017, I was on probation in a graduate program due to cognitive issues, and I started having double vision and lost control of my bladder twice (at my internship, no less). I had another MRI, which found at least one periventricular lesion, as well as others in other places (they would only tell me I had “less than 10” lesions). Finally, I was dx’d with MS in October 2017.

I went on Tecfidera, but it made me super-nauseous unless I took it with food, but I kept forgetting to take it (one of my cognitive symptoms). Because of that (which she called “medication noncompliance,” like I was refusing to take), she put me on Rebif. That was in December, and I’m still waiting for the insurance dust to clear (despite several calls to try and move the process along) on that.

I know others here have experienced this, but it’s been incredibly frustrating to know something is really wrong and have doctors dismiss you as a “hysterical woman” your whole life. And even now, I know my MS is progressing fairly quickly (due to spasticity and physical dysfunction), but when I told my neuro that, she started talking about how common depression is with MS. She did order another MRI and a neuropsych exam...and then went on maternity leave. I couldn’t get in to see the neuro covering for her until nearly her return date, so I just scheduled the “test results” appointment for when she’s back (April 30).

At this point, I’m pretty sure I’ve transitioned to SPMS, and since there’s really nothing they can do for me, I don’t really see a reason to go back to any doctor. I’m tired of not being taken seriously. I had to withdraw from my graduate program because of the cognitive issues. There’s no way I can work because time doesn’t “flow” like it used to—I lose track of time constantly—and am so fatigued that showering every day is a challenge. But due to the way they figure “qualifying quarter of SSDI coverage,” I don’t qualify (they don’t consider being in grad school “work”). I’m kind of at the end of my rope.

Sorry for being such a Debbie Downer. Thanks for listening/reading.


** 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. **

[GESSA]

Really Good Article

Full text, even! 🙂

http://journals.sagepub.com/doi/10.1...52458518803785