Dx without lesions?

[Leeaura]

Has ANYONE here been Dx RRMS without ANY lesions?

[SNOOPY]

Yes.

That was a very long time ago.

[22cyclist]

It doesn't happen anymore due to the McDonald Criteria for diagnosis of Multiple Sclerosis. This is a worldwide criteria for diagnosis. You can google it. It is called the 2010 Revised McDonald Criteria.

Lisa
Moderation Team

[SNOOPY]

Lisa,

MS can still be diagnosed in this day and age with a clear MRI. MSWorld has had members, who have come and gone, who were diagnosed with clear MRIs. The percentage of those with clear MRIs and MS are very small (5%).

Is it difficult to receive a diagnosis with a clear MRI? Yes.

From the National Multiple Sclerosis Society Website:

It should be remembered, however, that approximately 5% of patients with clinically definite MS do not show lesions on MRI at the time of diagnosis.

http://www.nationalmssociety.org/abo...mri/index.aspx

[22cyclist]

SNOOPY: I am not going to get into this argument again. This is an old statement. I don't know why it is still on their website when clearly the McDonald Diagnostic Criteria does not let doctors diagnose without 2 lesions. Talk to some neurologists. I have talked to many, have worked with many. They do not diagnose without lesions anymore. A person may at the beginning have no lesions but they have to wait until they show lesions before being diagnosed. Read it in the chart that shows doctors how to diagnose. It is a worldwide chart that guides docs.

Please take the time to read through the chart of the 2010 revised criteria for diagnosing Multiple Sclerosis. That is what docs have to use. You will find there that there is no case for 0 lesions.

This has nothing to do with the NMSS, this has to do with diagnosing MS.

Lisa
Moderation Team

[rdmc]

Not meaning to step into the middle of a "discussion"...but they still can diagnose can still be a clinical one. Here's a link to the study in the Annals of Neurology. I don't want to discuss the issue...just posting the article.

"Although the diagnosis can be made on clinical grounds alone, magnetic resonance imaging (MRI) of the central nervous system (CNS) can support, supplement, or even replace some clinical criteria" as most recently emphasized by the so-called McDonald Criteria of the International Panel on Diagnosis of MS."

Another passage (notice the word "or"): "There was consensus among the Panel members that before a definite diagnosis of MS can be made, at least 1 attack must be corroborated by findings on neurological examination, visual evoked potential (VEP) response in patients reporting prior visual disturbance, or MRI consistent with demyelination in the area of the CNS implicated in the historical report of neurological symptoms."

The entire test of the study is found here:

Diagnostic criteria for multiple sclerosis: 2010 Revisions to the McDonald criteria

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084507/

Then the real question becomes, would a neuro diagnose without lesions, although there is still room for a clinical diagnosis, I'd have to say there aren't many neuros in this country that would diagnose with out lesions...but that doesn't mean it can't be done. I think this may be done more in countries where a dr. might not have an MRI readily available.

[bwmorris]

Joining the discussion again; I agree with everyone!

I agree with people who seem to disagree here, and I'll tell you why. I think the main point of confusion in these discussions centers on the word "lesion".

In this context, a lesion is a kind of thing in your central nervous system. It's not a paraclinical MRI image, it's not a clinical neurological exam, and it's not a clinical patient history.

These three things are ways to try to detect whether there is or was a lesion in your CNS. One may fail where others succeed.

For instance, it is consistent with the McDonald Criteria that a good neurologist can do an exam in her office and take your symptom history and diagnose you with MS. This is independent of whether an MRI (at 1.5 Tesla or 3 Tesla or whatever power you have) shows your current or past lesions. Especially for past lesions that may have healed, an MRI may not be as reliable as your symptom history.

This doesn't mean you won't still get an MRI if you satisfy the McDonald Criteria based on exam and history. It does mean that if your neurologist has ruled out MS-mimics, and ruled in MS based on exam and history, then she is within the scope of the McDonald Criteria to diagnose you even if your lesions do not show up on the MRI.

Remember, lesions are things in the CNS, and are not identical with their pictures. It's just like if my friend is hiding in the shadows and I see her and report she's there, it doesn't matter if my friend doesn't show up in a picture from a camera without a flash. She's still there, and I'd be surprised if you didn't believe me!

So I agree with Snoopy that:

MS can still be diagnosed in this day and age with a clear MRI.

This does not mean that MS can be diagnosed these days with no lesions (things in your CNS). Just that MS can be diagnosed these days with no lesions showing up on MRI scans (pictures of your CNS).

So I agree with Lisa that:

[…]clearly the McDonald Diagnostic Criteria does not let doctors diagnose without 2 lesions.

I also agree with rdmc that:

[…]they still can diagnose […] a clinical one.

I take rdmc to mean that a lesion can be found clinically (like through a neuro exam), rather than just paraclinically (like through an MRI scan).

As is often the case with perceived disagreements, I think what's going on here is just that we're talking past each other, based on different uses of the term "lesion" (MRI lesion picture and the lesion itself).

Leeaura, I think that the only people who have been diagnosed without ever having any lesions are people who have been misdiagnosed, since scleroses are lesions: my understanding is that having multiple sclerosis is having (had) multiple lesions.

Shouldn't they call it Multiple Scleroses? A stamp collector wouldn't say "I have multiple stamp." Anyway…

It may be that people have been accurately diagnosed without currently having lesions (regardless of the McDonald Criteria), since lesions can come and go, and they may be in remission at the time of diagnosis. This might seem weird, except when you think of how long it usually takes to get in to see a neurologist the first time!

But I think the important thing to be aware of in this kind of discussion is that lesions can be detected in different ways, and just because you can detect a lesion one way doesn't mean you can detect it all other ways.

Of course, I take it that we're talking theory here, in terms of what's consistent with the McDonald Criteria. It may be that some or even most neurologists are reluctant to diagnose even the most clinically obviously lesioned patients, if they have clear MRIs. Does this negatively run counter to the quick diagnosis desideratum? Maybe.

So anyway, at the same time I say "yes" to the theoretical possibility of diagnosis with a clear MRI, while saying "no" to any accurate diagnosis without any lesions ever. Lesions are things in your CNS, not pictures, and there's more than one way to find them!

[Torn]

I didn't read other post because this is a sensitive subject for me. However, YES you can be dx with ms without any lesions. The head of the MS department at Stanford dx me with MS minus lesions on MRI. A second opinion also agreed. My current nuero is having me see dr green at Ucsf who also agrees that I have ms for some additional help on my treatment. I believe it's possible it's an unnamed/known form of ms or a similar disease. For now I'm classified as atypical ms.
I'm not sure why this brings up so much argument by everyone here. I've had many very well educated doctors tell me this. For those who don't agree, please understand how difficult it is to not "fit" in anywhere. The truth is no one really fully understands.

[MSer102]

In reading about the 2010 revision to the McDonald criteria, I read where at least one doctor on the panel said that the idea behind the revision was to make it easier to diagnose people who meet the criteria not necessarily to make it harder to diagnose people who don't.

I've read statements from MS specialists who said that people can still be diagnosed with MS without lesions if they meet all of the other criteria with test results that support MS and rule everything else out. A positive LP, positive evoked potentials that indicate demyelination and history of relapses and remissions that act like MS are enough for some doctors to diagnose some patients with MS withoug lesions. It's rare and it doesn't happen quickly but it does happen. So that statement from the NMSS about 5% of people not having lesions at the time of diagnosis has neurologists who back it up.

There are also parts of the world that don't have easy access to MRIs. The purpose of the 2010 revision was NOT to make it impossible for people in those areas to be diagnosed with MS. The journal article that released the new criteria allows for that by saying that MRIs aren't absolutely necessary for diagnosis.

So sorry, 22cyclist. This is yet another instance where the medical community and the medical literature don't support your opinion.

[wheeliegirl]

I was diagnosed with MS without lesions on the MRI. Or at least I was first told no MS lesions. However there were bright one seen in my optic nerve both eye that were said to be from a prior eye surgeries. The radiologist must have been reading it for the whole 5 mins. while asleep. I had the eye surgery back in 1999 and this MRI was done in 2007. Duh. Yea lesions still glowing for 8years hummmm.
My current Neuro . did and MRI in Jan 2010 brain and c-MRi . No current lesions, still clinical evidence of MS,tons of neurological history back to teens from me and other doctors reports so he ordered a referral for emg/ncv test. The test was done neg for emg but positive for nerve damage in several areas. ON's was detected by ophthalmologist and vision field test was very bad. I was dx's with RRMS in 2010 but Neuro suspects that I've had it for several years.
Now did I believe him at the time yes and no. I had to get a few second opinions before going back to my Neuro. upset cause I knew he was right . Now I'm SPMS. Truthfully I'll always have doubts . I've heard that In most people that they are only 90% sure at best maybe less.
Its just so hard to diagnose some of the time . Sometimes those darned lesions are hard to spot on a MRI .
I'm very thankful that my Neuro had the insight to think about other tests to confirm MS . Without him doing this I may have never gotten diagnosed correctly.

[bwmorris]

As is often the case with perceived disagreements, I think what's going on here is just that we're talking past each other, based on different uses of the term "lesion" (MRI lesion picture and the lesion itself).
[…]
Lesions are things in your CNS, not pictures, and there's more than one way to find them!

I know I write long posts, and I know that many people just don't read long posts. Maybe I'm on people's "ignore" lists because of it. Here's a shorter post (for me ).

For those who'll listen, my plea is that we stop using the term "lesion" ambiguously in this context, because that ambiguity is vicious here. If you mean "CNS lesion", say that. If you mean "MRI lesion", say that. Just please be clear.

If you read through this thread and try to specify which of the two you think people mean each time they say "lesion", the conversation can change dramatically. Try to be charitable in your interpretation; we all deserve it.

Thanks, y'all!

[wheeliegirl]

Good point on lesion locations. I ended up have CNS lesions . There are a few different diseases and problems that one may have lesions in the brain (lupus,migraines,stroke ) to name a few were lesions may be found on a brain MRI. MS lesions have a typical pattern to them.
My Neuro is convinced that I also have small spinal lesions. I've heard about newer stronger MRI's that have come to the market in the last 2 years that may be able to pick up more lesions but they are very costly . Most facilities just don't have the money to afford this . I've heard that there is one at the LA hospital . I wish I knew that name of the MRI machine . I believe that you can stand up or sit upright in this one.
I found it . Its the Fonar UPRIGHT® Multi–Position™ MRI.
They say that when a patient is in other position rather than laying down it is easier to get a better picture of what is going on. Hopefully these MRI machines will be more affordable and accessible in the future.

[SNOOPY]

I didn't read other post because this is a sensitive subject for me. However, YES you can be dx with ms without any lesions. The head of the MS department at Stanford dx me with MS minus lesions on MRI. A second opinion also agreed. My current nuero is having me see dr green at Ucsf who also agrees that I have ms for some additional help on my treatment. I believe it's possible it's an unnamed/known form of ms or a similar disease. For now I'm classified as atypical ms.
I'm not sure why this brings up so much argument by everyone here. I've had many very well educated doctors tell me this. For those who don't agree, please understand how difficult it is to not "fit" in anywhere. The truth is no one really fully understands.

Hi torn,

As someone who received a diagnosis of MS with a clear MRI I do understand.

Some people only see black and white. MS and the diagnosis of MS is not black and or clear cut...some do not "get it."

Take care

[22cyclist]

I have worked for neurologists at both UNC and Duke University Medical Centers. Both places use exclusively the chart on the 2010 Revised McDonald Criteria only for diagnosing MS. Do they miss the cases of atypical MS like SNOOPYs , could be, however, they say that this is what is used all over the world, in India, in every country. This is just where I am coming from. I mean no harm in saying this.

I completely understand where you guys are coming from. Each of us are coming from different places. Lets try to give each other more respect. I will start. I apologize SNOOPY if I have hurt your feelings. I am a clinician. This is just where I am coming from. I respect your position, understand it, and would recommend that people who can't get a diagnosis see your doc, he may be a much better clinician.

MSer102. I am happy you can read a medical document. I can too. I was coming from a different place. You don't understand clinical medicine. We will have to learn to agree to disagree on some things without getting petty and personal. You do not understand where I am coming from. I fully understand where you are coming from. Lets agree to be civil.

[Torn]

22cyclist, your latest post is very good. I appreciate you trying to understand where us "atypical" ms dx patients are coming from. I understand how your opinion is formed and see where you are coming from. Thank you for your knowledge on the subject as it is helpful to many and thank you for realizing how words can be hurtful. I truly believe there is still so much unknown when it comes to ms and other autoimmune diseases that ten or twenty years from know we may have new info to better understand all this. Touchy subject for so many of us.