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Old 04-23-2008, 07:54 AM #11
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I like how they describe them as "eloquent" - what a neat term. I have 10 or so non-eloquent or what my neuros have called "silent lesions". I feel lucky that so far - they haven't given me any problems and my MS is completely invisible to me.
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Old 04-23-2008, 08:18 AM #12
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Snoopy, any idea who this was written by. It seems it must be a PwMS.

I don't think that we can take anything written there as absolute either. Just as the author has contradicted some things our neuro's/doctors might tell us, I would beg to differ (or at least seek clarification) on a few generalizations he/she has made in this article as well.

Cherie
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Old 04-23-2008, 08:39 AM #13
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Quote:
Originally Posted by lady_express_44 View Post
Snoopy, any idea who this was written by. It seems it must be a PwMS.

I don't think that we can take anything written there as absolute either. Just as the author has contradicted some things our neuro's/doctors might tell us, I would beg to differ (or at least seek clarification) on a few generalizations he/she has made in this article as well.

Cherie
I do agree with you but unfortunately there was not an author or date. I found it on medhelp where patients can ask questions that are answered by doctors ----
http://www.medhelp.org/

I assumed, possibly incorrectly, it had been written by one of the neurology doctors.

I, myself, found it to be one of the more understandable articles about lesions and symptoms.

Edit: I went back and looked better - it appears to have been written by a member and not a doctor - I was wrong
http://www.medhelp.org/health_pages/...tory/61?cid=36

I guess I need to "look" better before I post
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Old 04-23-2008, 09:17 AM #14
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What lead me to believe it was a patient was that I noticed his/her sentence:

"He looked at my newest MRI and said,"Well, I don't see a lesion that's causing your face pain. That's good! You don't want a big lesion in your brainstem!" By saying this he was indicating two things. The first is that he knew I had a lesion, but it was invisible. The second was that he believed me when I said I had pain, even though there was no proof on the MRI."

I agree that the author has done a GREAT job of simplifying the complicated . . . but much of what he/she said is based on some old "theories" too. For example, even in the above statement, the author is implying that the problem is that a "lesion" just did not show up on his/her MRI. While I don't doubt that some lesions hide for a short while, I suspect that it may actually be an entirely different part of the disease process going on that has caused his/her facial symptoms . . . not necessarily as a result of yet "unobservable lesions".

(Many of his comments are based on the assumption that lesions are the end-all, be-all to this disease, and that I wouldn't necessarily agree with that either.)

Many of us had symptoms long before we were dx, and some of us can date that back 10+ years. What is going on in our bodies that the lesions aren't always obvious throughout this period; is it that the MRI just didn't pick them up (they are that small?, but causing that much grief?), or is it that something else is going on too and the lesions are just objective EVIDENCE of the bigger picture with this disease?

It seems like there must be more to this because quite often those with PPMS don't have any or many lesions, yet they are often the quickest to become disabled. Same with SPMS, where the "lesion activity" slows down, yet these people continue to PROGRESSIVELY decline.

This authors summary is generalized, fairly accurate, and simple . . . but I just wanted to point out there is probably much more to the story then he/she implies too. From experience, I feel that I could expand on or refine the spinal lesion information, especially with regard to the hidden lesions/the dx process. For example, although spinal lesions might be sneaky, the symptoms from them are pretty cut and dry to the professionals.

Generally speaking though, the information in this article are simple and reasonably accurate, based on some theories.

Cherie
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Old 04-23-2008, 11:55 AM #15
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Quote:
Originally Posted by Natalie8 View Post
Wiz, how come you don't have many brain lesions anymore? Do you think the tysabri shrank them?
That's what the neuro said last time when he looked at the new MRI. I suppose it should be that way too? Since it does its work in the brain?

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I have these meltdowns, too, when I get too hot. I dread this summer 'cause I know I'll be quarantined inside.
I know, it's one of the toughest things for me since I've always relished getting outside and digging in the dirt for half the day a few days a week!
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Old 04-24-2008, 05:07 PM #16
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Snoopy and all, Thank you very much for your words about my "article." I wrote most of the the articles on our Health Pages. I am a member moderator of the MS Forum on MedHelp. I was a pediatrician in a former life (before MS) so I sometimes can unscramble the medicalese. If there are further things I can clarify, just ask. There are several more articles on the topic of MRIs in MS on those Health Pages.

Thanks again, Quix
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Old 04-24-2008, 05:28 PM #17
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Quote:
Originally Posted by lady_express_44 View Post
Snoopy, any idea who this was written by. It seems it must be a PwMS.

I don't think that we can take anything written there as absolute either. Just as the author has contradicted some things our neuro's/doctors might tell us, I would beg to differ (or at least seek clarification) on a few generalizations he/she has made in this article as well.

Cherie
Hi, I am the author of the article and yes, it will be in contradiction with other things you have read. This is for several reasons. The first is that I wrote it for my own forum and played a little "fast and loose" with the science with the intention of making the underlying points more understandable.

The second is that many neurologists misunderstand the diagnosis of MS and misstate the reality of the "activity" of MS lesions. I, as a physician with MS myself, have found that many neuros, included ones who call themselves MS Specialists, work from inappropriate and unsubstantiated "rules" in diagnosing it, and in choosing to treat or not to treat. And that is why so many people find confusion between what their neuro tells them, what they read, and what people say on a forum.

The third is that it was never intended to be a scientific resource, just an aid. It is not "referenced" at all. But, I would be glad to answer any inconsistencies you find and explain where the difference in facts/opinion lies.

Quix, Avonectrix since 5/07
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Old 04-24-2008, 05:39 PM #18
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Quote:
Originally Posted by lady_express_44 View Post
What lead me to believe it was a patient was that I noticed his/her sentence:

"He looked at my newest MRI and said,"Well, I don't see a lesion that's causing your face pain. That's good! You don't want a big lesion in your brainstem!" By saying this he was indicating two things. The first is that he knew I had a lesion, but it was invisible. The second was that he believed me when I said I had pain, even though there was no proof on the MRI."

I agree that the author has done a GREAT job of simplifying the complicated . . . but much of what he/she said is based on some old "theories" too. For example, even in the above statement, the author is implying that the problem is that a "lesion" just did not show up on his/her MRI. While I don't doubt that some lesions hide for a short while, I suspect that it may actually be an entirely different part of the disease process going on that has caused his/her facial symptoms . . . not necessarily as a result of yet "unobservable lesions".

(Many of his comments are based on the assumption that lesions are the end-all, be-all to this disease, and that I wouldn't necessarily agree with that either.)

Many of us had symptoms long before we were dx, and some of us can date that back 10+ years. What is going on in our bodies that the lesions aren't always obvious throughout this period; is it that the MRI just didn't pick them up (they are that small?, but causing that much grief?), or is it that something else is going on too and the lesions are just objective EVIDENCE of the bigger picture with this disease?

It seems like there must be more to this because quite often those with PPMS don't have any or many lesions, yet they are often the quickest to become disabled. Same with SPMS, where the "lesion activity" slows down, yet these people continue to PROGRESSIVELY decline.

This authors summary is generalized, fairly accurate, and simple . . . but I just wanted to point out there is probably much more to the story then he/she implies too. From experience, I feel that I could expand on or refine the spinal lesion information, especially with regard to the hidden lesions/the dx process. For example, although spinal lesions might be sneaky, the symptoms from them are pretty cut and dry to the professionals.

Generally speaking though, the information in this article are simple and reasonably accurate, based on some theories.

Cherie
Hi, I don't understand exactly where all of the replies end up here. I hope I am replying to the post about the concept of "lesions.:

Lesions in the most basic medical/physiological (and in MS) sense are defects in the "nerves." Whether they show up on the MRI is irrelevant. When one speaks of "lesions" on the MRI they are, indeed speaking of visible and definable areas of change on the images.

When I write of lesions I speak of damaged oligodendrocyte/axon/myelin units which are more likely to be symptomatic in the spinal cord. They may or may not be symptomatic in the brain, depending on their size and location. The damage may be inflammatory as is seen in the autoimmune and other attack on the myelin or the damage may be degenerative as in direct axonal degeneration and death as is seen (from early in the disease) the areas of "Black holes" seen in the T1-weighted images on MRI. The axonal death is felt to be largely responsible for the accrued disability in MS.

Again, my articles were never meant to be a scientific reference. But, when there are questions about what I was referring to please contact me and I'll answer here. Also, it will help me know where I'm being unclear.

I was a pediatrician for 23 years, but my post-doc work was in Immunology, so I try to NOT mislead. Thanks for your comments.

Quix
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Old 04-24-2008, 05:55 PM #19
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Quix,

I ran across what you wrote quite by accident but as I am sure your well aware there are always questions related to lesions and symptoms from those who are newly dx'd.

I found what you wrote to be very understandable and hoped others might also.

I do appreciate your willingness to come here and answer any questions.

And, knowing ladyexpress (cherie) I'm sure there will be questions
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Old 04-24-2008, 06:02 PM #20
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Quote:
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Quix,

I ran across what you wrote quite by accident but as I am sure your well aware there are always questions related to lesions and symptoms from those who are newly dx'd.

I found what you wrote to be very understandable and hoped others might also.

I do appreciate your willingness to come here and answer any questions.

And, knowing ladyexpress (cherie) I'm sure there will be questions

***************

Shoot! One last comment and I'll disappear, I promise. As to the "old concept" that lesions may be invisible, it is a growingly "new" concept. As with everything we try to measure or visualize, something may be invisible if the instrument we are using does not pick it up. I had a spinal MRI done at a major medical center on a 1.5 Tesla MRI machine. It was completely clear. One month later, when I developed a severe L'Hermitte's. I had it repeated on a 3 Telsa (twice the magnet power) machine. This MRI showed 6 old (non-enhancing) lesions that had been missed by (or were invisible to) the 1.5T machine. "Invisible" is relative.

Back to back testing of the 1.5 T MRI compared with the 3T - shows the 3T picks up, on average, 25% more lesions. The 3T machines are still fairly scarce in this country and very scarce outside the US. The new machines which are 7T are still being studied, but on cadaver brains pick up between 20% and 40% more lesions than the 3T. The increase is not linear with the increase in power, but it is substantial.

Most of the people on my forum have had there MRIs done on 1.5T or less. You should all check. There are hundreds of the original open MRIs still in use which have Tesla strength of <1T. I think, unless you have checked and insisted on the better machines, that most of you have also had that experience. Yes, absolutely definitely, we all have dozens, if not hundreds, of "invisible" lesions.

So, yes, I speak from the perspective of a patient (who was non-diagnosed for two years!) leading me to do a lot of reading on my own, and as a physician with a fellowship in Immunology. Believe me, guys, I'm on your side. There are lots of poorly informed and arrogant neurologists out there!

I apologize for the 3 posts in a row. I hope they landed where I wanted them to. And I mean no offense to anyone and took none myself. You are absolutely right that my article is very simplified - being aimed at an audience who needed just the basic understanding of the topic.

I hope to hear from some of you...Quix, MD
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