Lesions

[dogmum]

Hi all... I had a good long chat with the local ms neuro yesterday. She said that they need 9 lesions to make a diagnosis. Isn't this true only in the case of no clinical attack and on the 2005 McDonald criteria?

Reading the 2010 revised criteria it would seem that I don't need the LP to confirm what's already visible on other exam findings and that many less lesions are required to dx CDMS. In fact, the more I look into this the more interesting I find the whole thing. According to this article, MS should be possible to dx without imaging being absolutely necessary, and the more I read about it, the more it seems possible to get a dx by the revised McD criteria from 2010 with two "clinical" lesions and attacks.

This makes it hard for me to understand why it's hard for so many who actually have lesions "suggestive of MS" even on low quality imaging along with the sx's to match to get a dx. So many doctors seem to interpret the criteria differently as well. I took the following from an article about the 2010 revised McD criteria: http://journals.lww.com/neurotodayonline/Fulltext/2011/04210/Revised_McDonald_Criteria_Make_Diagnosis_Simpler,.10.aspx

Together, the new criteria are “simpler to use, but there is no sacrifice in sensitivity and specificity.”

Dr. Lublin added that it was still possible to make a diagnosis of MS without an MRI. “If a person has clinical evidence of dissemination in space and dissemination in time, then that is satisfactory for a diagnosis of multiple sclerosis. You don‘t have to have any tools other than ears to listen and a brain to analyze, and perhaps a reflex hammer,” but it requires waiting longer to demonstrate clinical dissemination in time. “What the MRI allows us to do is to shorten that time,” he said.

The revised criteria retain the previous diagnostic requirements for primary progressive MS, but with one important change. As before, they require one year of disease progression, plus two positive findings in three criteria: brain MRI, spinal cord MRI, or cerebrospinal fluid antibodies. But instead of the earlier requirement for 9 T2 lesions in the brain, the new criteria require only one T2 lesion in at least one brain area characteristic for MS.

What are your thoughts on this?

[62Rainey]

I was tested for Lymes disease. Lupus, fybromyalgia, and I can't remember what else.  They have not found any other tests that would rule out MS.  I'm glad your doc found something treatable and you're feeling better!  
Rainey

[dogmum]

I'm glad to hear that you're getting better and that the proper dx was found for you.  I personally tested negative for Lyme.  It is rare and my first neuro didn't want to test for it, and I had to ask her to include it in with other blood tests she was ordering.  The second neuro I saw, however, ordered it without even telling me he had done it.  I just saw it on my hospital dismissal papers as testing negative.  

I hope you continue to recover and thank you for sharing.  :)

Laura

[gibsonandnia111]

I was wondering how many of you that posted on here have been tested for Lyme Disease?? I was dx with MS back in 2003-2005 and doc said he "highly suspected" it...Turns our after more weird symptoms (cold, numbness, brain fog, pain, joints, eyes, headaches, lesions and more just like MS etc...) and other issues, an "out of the box" medical doctor, who also practices holistic, tested me for Lyme and other "rare" disease. Lyme mimics MS all the time! I was positive and on the road to recovery and asked my doctor why her NEVER tested for Lyme or other such disease. he said something they just don't do on regular basis. All the money and time on tests and more tests for MS and turns out it was Lyme Disease all along and now I'm getting better, have a little bit of a treatment journey a head of me, but thankful proper dx was finally given. I would recommend you all ask your doctor to test you for Lyme Disease! It's more common and becoming more more rampant in America in ALL states! Truth is Lyme is NOT RARE! I

[dogmum]

I'm not sure.. If I understood her correctly, 9 lesions and 1 attack = CIS. Second attack converts to cdms. I'm not sure if they would give a dmd for CIS or not but they are really hesitant. I had what my eye doctor and several others said was ON, (maybe twice) but my neuro decided it couldn't be, so no drugs for that either. I've given up on the label, but would love some sx management drugs. Unfortunately I'm having a heck of a time getting those too. Even with a nasty 2nd degree burn on my arm from a spasm whilst working in the kitchen.. Did I already mention that?
I might be back asking for neuro recommendations across the pond soon. Still deciding how to proceed.

[littlelawbear]

Hi dogmum -

I'm confused as to why you need a definite diagnosis of MS in order to start a disease-modifying treatment. I have only had one attack (transverse myelitis & possible optic neuritis from June - September 2011) and I have 8 lesions total (7 on brain and one on spine).  I was diagnosed with Clinically Isolated Syndrome highly suggestive of MS, and I was put on a DMD (Copaxone) immediately.  I have had no further attacks and I'm doing really well.  I think Copaxone is at least partly responsible for that.  What about a diagnosis of CIS - would that get you on treatment where you are?

[dogmum]

Thanks for your replies. I hadn't read too much on the Barkhof criteria. It makes sense now why she is waiting for 9 lesions, even if I still don't agree. Getting new lesions scares me and I hope I can find a neuro who decides to start treating me before waiting to get to that point.

We'll see. Thanks everyone again for your input.

[Sailorsong]

When I got my DX for MS I had 3 atypical but suggestive lesions in my brain, a 50% narrowing of my spinal cord ( probably black hole). and clean LP.

Dennis

[PossibleMSclub]

The 9 lesions requirement comes from Barkhof MRI criteria (must have 3 of four) for dissemination in space used in the McDonalds diagnosis criteria.

- 1 Gd enhancing brain or cord lesion OR 9 T2 hyperintense brain and/or cord lesions if there is no Gd enhancement (Gd is contrast)
-1 or more brain infratentorial or cord lesion
-1 or more juxtacortical lesion
- 3 or more periventricular lesions

[Guitar_grrrl]

I have an older neuro (he's 78) who is an "old school" diagnostician.  I have very few lesions, negative LP, a classic time line, and a wildly abnormal neuro exam.  He had no trouble diagnosing me.  I saw an MS specialist who is more of a lesion counter, and she was more reluctant.  Seeing how my symptoms and disability were charging forward, I stuck with the old guy, and am on Tysabri.  Since being on Tysabri, I haven't had any serious flares in 2 years, and just slow progression.  I'll take slow...

[dogmum]

PS - Happy Easter to you too, Sarah!  And nice to "meet" you!

[dogmum]

Counting yesterday's appointment, I now see two MS specialists and one regular neuro.  I went looking for a second MSologist when I started to worry I was in a new attack (since Sunday) and my current one isn't available and doesn't want to "rush".  I have Lhermittes again, tingling up to my calves and numbness on the tops of my feet, and I've already had a trip to the ER this week with MS hugs that wipe me out.  Also getting weird cluster headaches which I've never had in my life.  

I'm wondering if Italy's MS society doesn't recognize the revised McDonald criteria 2010 as the official dx criteria.  I've been to see three and they all seem to be terrified to tell me I have MS (as if not knowing is a treat).  I wouldn't care about the label except that it's keeping me from getting the drugs I'd love to have to start controlling sx's.  I haven't even thought about DMDs,  but just some help with the tremors/spasms/ON? would be sooooo much appreciated.  They tell me there is no drug that really helps with the hug... true?  

I also wonder if they would see 9 lesions if they had better equipment (e.g. 3T MRI) around here.  It's interesting to me that no one else has heard this.  So no one else had a "clean" MRI that was basically less than 9 lesions?  

They have me scheduled for another one in July, but I'm wondering if it might be time for a trip to the states to see the fam and have it done while I'm there.  

Thanks, group, for your thoughts... :)

Laura

[Sparkysarah]

Hello..we have not met before but just thought I would add to everyone else's comments. I was dx's with only five lesions so not sure where your neuro is coming from? Good luck and seek another opinion

Best wishes and Happy Easter

Sarah

[ku111]

I honestly have never heard this criteria.  My son had several on his brain and spine and we have no diagnosis yet.  It's only "highly suspected".  We see an MS Specialist.  Do you see one?

[doublevision1]

Others here have encountered a similar misinterpretation by their neuros.  I would not have confidence in a neuro who erroneously tells a patient that nine lesions are the criteria for a MS dx.  This is wrong.  

I was dx'ed with 2 lesions: 1 brain stem, 1 c-spine (dissemination in space) and 2 clinical attacks (lhermitte's in 2006, and then Diplopia, ms hug, numb hands and feet, fatigue, etc in 2007).  LP was inconclusive (elevated proteins but no O-bands).  

If the doc you spoke to is a "MS specialist" I would be even more concerned, as ought to know better.  

Seek a second opinion.

[Ojibajo]

I guess I haven't heard of that "rule". I have a diagnosis and I am pretty sure that I don't have 9 lesions.