Keeping the MRI (and other tests) in Perspective

[Quixotic1]

Now that we have a real specialist in MS, Dr. Daniel Kantor, available to us, I hope you are reading his answers.  In the couple weeks he has been with us, he has addressed many of the topics we discuss over and over on the forum.  I have 3 or 4 burning questions that I would like to ask Dr. Kantor, but have been totally unsuccessful in getting a question in.  I am deciding if I can spend the $25 to get these asked anyway so we have the answers for the forum.

I would like to comment on a couple of these.

The first is whether you can have a negative MRI and still have MS.

Dr. Kantor repeatedly states that the MRI is only a test that we use.  We have to use it as "supporting evidence" to the very important history and physical.  He clearly agrees that the bedrock of the diagnostic process is obtaining a very thorough patient history and doing a thorough neurologic exam.  After this we look for more information.  When asked about negative MRIs, Dr Kantor has stated this:  With repeated 3T MRIs (and negative LP results) it is extremely unlikely that the person has MS.

The things for us to think about from this seem to be those qualifications of "repeated," "3T," and "negative LP":

-- whether a person's MRIs were even done on a high-resolution MRI such as the 3T.  We know that most of us have not had a 3T scan, but had them on 2.0T or lower.  The 3Ts are not available everywhere yet.

-- Whether over time on the 3T has been repeated and is still negative.  Would a single negative 3T MRI, but very suggestive H&P (with good exclusion of mimics) still cause him to keep MS high on his list?  We have a lot of members who have been told that a single negative MRI (of any strength) is proof-positive they do not have MS.  They have been discharged from follow up with no plan to repeat the MRI.

-- Dr. Kantor has included a having "negative LP" in his comments.  I would still wonder if his assessment would be different for those of us who have had a negative MRI (usually on lower resolution equipment) but who have LPs which are positive for 2 or more O-Bands or who have an elevated IgG Index.  

-- NancyT brought up a situation that we have talked about before - the "falsely negative" MRI.  This is what I discuss in my HP on how a person with MS "can" have a negative MRI.  She mentions the atypical lesions that could be discounted as being normal for a person's age.  This is one of the things which delayed my diagnosis.  But, there are other ways an MRI can be called normal, but that actually shows lesions.  This is why I maintain that the neurologist should look at the MRIs also and not just rely on the radiologist's reading, and why I suggest that each patient should obtain and read a copy of their MRI report.

-- I would like to ask Dr. Kantor about the importance of the LP.  Does he use it when the MRI is negative or very atypical to add more information?  Or does he do one routinely?

-- I would also like to know how much weight he places on the LP if it is negative.  Again, we have people whose doctors have made the diagnosis of MD, only to rescind it when the LP was negative.  Can a person with RRMS have a negative LP? Repeatedly?

Dr. Kantor has also made reference to lesions below the resolution of the MRI machine.  Essentially he is talking about what we have been calling invisible lesions.  While a lesion that can't be seen can't be used for diagnosis, it seems clear to me that Dr. Kantor believes that some lesions are below the resolution of current MRI machines.  I would assume, but would ask him, if such small lesions can be symptomatic.

Finally I would like to know more about the "dynamic aspects" of MS.  We have had many people come here and tell us that their doctor has rejected the diagnosis of MS, or even taken it from them, because their MRIs had not changed over some period of time.  For one member that period was only a month.  We know that was inappropriate.  For others the period of time has been 3, 6 or even 12 months.  For others it has been in terms of years.  Most of these people had progression and changing in their symptoms and good exclusion of other better possible diagnoses.  So I wonder how long the MRI picture can be "static" (with ongoing and progressing symptoms and positive exam) before it is appropriate to exclude MS from consideration.

So, I am throwing these thoughts out to you.  These are answers - or guidelines - I would like to hear.  what about you guys?  If enough of you also want to hear some words from Dr. Kantor on these questions, I will spend the money for his answers.  His answers would likely cause me to look closely at the things I have written to make sure I am not giving out false hope or information.

What are your opinions?

Quix

[sunshine8]

I am one of those that has a "positive" MRI (My doc's have not been lesion counter's, but my untrained eye counted at least 12 on the first MRI and at least 15 on the second) and a "negative" LP. My 1st Neuro said he ruled out all mimics, so left it as "Possible MS". The first MS specialist said "Nope,not MS" based ont he negative LP and wanted to take a wait and see approach. The 2nd MS specialist said "RRMS, no doubt" even with the negative LP based on MRI's and symptoms alone.

Long story short, with all of the conflicting information, whom do I believe? It seems that there is definitely conflicting diagnostic criteria even among MS specialists.

Can you really have MS with a negative LP and postive MRI?

-Amy
Diagnosed RRMS Oct 2008 (all by accident after a routine CT scan)

[wonko]

I'm not sure if this is the sort of reply you want, but I felt like piping in here since my MRI had 3 pretty different opinions, and since I did go through a full work-up including a 2nd MRI and an LP.

My 1st brain MRI at age 28 in Feb '08 showed 7-8 lesions.  But they were not all big enough or in the right places to alone diagnose MS.  I later had the MRI done with contrast, and none enhanced.  

Neuro #1 Told me and my PCP that my MRI was normal, because there was no enhancement.  He told me I had a problem with stress/anxiety and offered anti-depressants (which I declined).  I didn't collect the radiologist report until months later.  Once I did, I was alarmed and went to...


Neuro #2 Told me he was very concerned about my MRI for MS.  He ordered a repeat brain MRI and an LP.  He told me if the MRI changed at all, or if the LP showed any signs of MS (protein or bands), he would diagnose MS.

The repeat MRI in July '08 (about 5 months later) was unchanged, and my LP was negative.  Based on that, #2 ruled out MS and told me I probably had fibro and offered anti-depressants, which I declined.

Neuro #3 was at a teaching hospital.  I brought my whole case to him because I was confused and upset about what the heck was going on.  His take on it was to continue to treat my symptoms with neurontin, repeat my MRI's every 6 months, and "hope for the best."

There was a 4th nuero in the mix as well.  But I saw him early on and told him my MRI was normal based on what the 1st guy said.  I brought the CD with me, but he went on my testimony that it was normal and he dismissed me as having "something in the spectrum of fibromyalgia."


As you know, I ultimately sought out a Lyme doctor and in that way (and only in that way, as my regular physician wouldn't entertain the thought) was diagnosed with Lyme and have been in treatment for a bit over a month.

The etiologies on my MRI were:  Demyelinating disease, migraine heachahes, Lyme disease, vasculitis, and areas of gliosis related to prior ischemia or inflammatory disease.  From what I understand, about 1/2 of the lesions were tiny enough to be dismissed, while the other half were more concerning.

That's my story, and I'm sticking to it!

Great post.  I know my MRI confused me a lot, especially since the first neuro told me AND my PCP that it was normal, and then it resurfaced as the ONLY abnormal result from a barrage of tests.  It caused (and causes!) me a huge amount of anxiety.  

Anyway, I hope this post is the sort of data/feedback you are looking for.  I think the variety of response I got from my MRI indicates that interpretation is not universal.

[Heather3418]

Just staying on the subject of MRI's...with my very first attack, I had 5 lesions in the brain and on in the spinal cord at the T level. All enhancing lesions. Positive physical exam. No LP. Diagnosed with MS on the spot.

Neuro #2- one year later.  5 lesions-brain and one in spinal. Positive physical exam for "abnormalities." He said NO to an MS diagnosis.  Said spinal lesion was an "artifact."  Even though this lesion had been present in the exact same spot for over a year.  MRI showed no changes, no enhancement.  No LP, because I refused.

Neuro #3-now in the third year since first diagnosis.  MRI's-no change.  LP done-only one positive "0" band.  Re-diagnosed with MS.  Avonex started. Four years with this Neuro.  Changed Neuro's when I moved.  Went off Avonex, due to side effects.  So no DMD's for the next two years.  Next MRI.  Twelve+ lesions in the brain and still the lonely lesion in the T spine.

Neuro #4-started on Copaxone-12 lesions in the brain and one in the spine.  Started on Copaxone.

This brings me to the reason for my post.  I think Neuro #2 was an idiot of course.  He was a lesion counter and did not rely on the abnormal physical exam.  He just said that since there had been no progression in one year, that I couldn't possibly have MS.  He ignored what was looking at him straight in the face.  I do believe that if I had submitted to the LP when I was seeing him, that he still would not have given me a diagnosis of MS based on just ONE "0" band.

Alot of Neuro's simply seem to create their own rules when coming up with a diagnosis.  I firmly believe that.  What is clear to one, is not clear to another.  This seems to hold true with alot of our members on the forum.  It seems to be a hit or miss game, with alot of Neuro's.  None of us seem to be immune.  It is no wonder there is so much frustration with those in Limbo Land.  What is the answer to this common problem?  The Neuro's say no to MS, but will not tell us what is wrong with us.  They test for the mimics, come up empty, but still cannot explain the lesions on MRI or the physical, showing areas of abnormality.  We keep progressing, without further lesions on MRI, so therefore we are not treated for MS.  And then we have the ones that do show more lesions and distinct attacks and they still do not get a diagnosis...of anything!

I'm puzzled all the way around...

Heather

[Udkas]

Hi Quix,

What a fantastic lot of questions that I am sure we will ALL await Dr Kantors answers. It seems diagnosis is not easy and seems to have many rules,depending on what neuro you see and then for some people they get a diagnosis and it is taken away from them or is wrong.

No wonder we are all confused if our neurologists are confusing us....thanks for putting in the $25 as I am sure that the answers will benefit everyone on this forum.

THANK YOU!

[shoshin]

Here's what I think we should do. Quix should make a new post with a numbered list of all the questions she wants to ask. Everybody on the forum should try posting the first unasked question on the list until it gets through. Somebody eventually is going to hit the right time. With a little persistence, I bet we could get all the questions answered without anyone having to pony up $25.

sho

[Sunnytoday]

Quix. These questions are amazing. You know my case, and thes questions would answers so much for me. I've now been told something different by five neuro's and a resident.

I have that positive history, those repeated 3 T MRI's and that 2-obanded LP that you are talking about.

I've been told MS, possible MS," you do have lesions", "it's big white patches", "I see nothing at all" "you are fine".  and in the end, I have no diagnosis.

Please, I would LOVE to see these questions answered somehow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

~Sunnytoday~

[Quixotic1]

Well, not being very good at delayed gratification, I ponied up the $25 and asked the questions anyway.  We are awaiting his answers.

Sho - Great idea though.

Quix

[ShockedToday]

Quix,

Thank you for asking the questions.  I'm very interested in the results as I feel like I'm on the rollar coaster ride from #@$ right now.

1st mri showed 5 lesions- dx w/ migraines and sent on my way.

Started having periods of bizarre symptoms that would come and go.

Finally ended up at the neuro due to tremors, eye pain, visual symptoms, etc.

2nd mri- almost 20 lesions.  None enhanced.  Dx w/ MS and ON.  Sent for LP and VEP.

LP and VEP came up normal and dx of MS was taken away and now given dx of possible migraines again (I've had 1 migraine in over 2 years!)

Being sent for another MRI of spine and neck and was told if they were clear, he didn't know what was wrong with me!!!  

Thanks again Quix!

[JJFL]

Hey Quix....

I want to Thank You for your input on this forum.  You know my thoughts on the "Good Doctor". I hope you get your monies worth.


JJFL.....

[Quixotic1]

Well, we got the response to my questions that we were awaiting.

His answers were not quite what we were hoping for, but I will try to interpret what I think he meant.

1)  I asked what he would do in the face of a suggestive clinical history and physical exam if a 3T MRI of the brain and spinal cord was negative.

Dr. Kantor doesn't believe that there is such a thing as a "suggestive (history and physical) for MS.  Well, this basically cancelled out most of my questions.  I do have to wonder about this, since the McDonald Diagnostic Criteria of just 4 years ago allowed for the actual diagnosis of MS on the basis of the proper history and exam findings alone.  I also would have to wonder if there is nothing "suggestive of MS" then how does a doctor think of MS as a possible diagnosis to look at in the first place?

But, moving along, he did say that, depending on the case, he would plan to repeat the MRI in 3 to 6 months.

2)  I asked about the members here who have had repeatedly positive LP results, but who had a negative MRI - how he would approach the work up.  I had specified that a thorough work up for mimics was done.

He didn't answer this question except to say he didn't understand what I meant by a "positive LP."  He stated that other disease processes can cause some "positive" results.  Okay, I assumed that he would know that I was referring to the "positive" results of an elevated IgG or multiple O-Bands.  But, what he said was true.  Infections can cause elevations in the cell counts and the protein, often with a normal or reduced glucose.  Infections can also cause O-Bands, usually just one.

I would gather that he would suspect a mimic if the LP were positive for IgG Index or O-Bands and pursue that avenue vigorously, but I really can't speak for him.

3)  I asked when he does an LP

He answered this.  By request of the patient believing that this will give a definitive answer, though I presume he would attmep to educate the patient that it will not do so.  He also does an LP "If the patient does not have classic MS. If it "quacks like a duck, smeels like a duck" etc. then it is probably MS and we can rule-out other diagnoses with lab work.

By this I assume he means that if the presentation is very "suggestive of MS", but is atypical in some way, he does an LP to see if there are certain "postive findings" to help sway the diagnosis.

4)  Can a negative LP (as opposed to a positive one) be a deal-breaker and negate a diagnosis of MS?  He answered this question directly - No.  this is what we have already said, over and over and over.

5)  Can lesions be invisible, that is below the resolution of the MRI, and still be symptomatic.  His answer was also direct:

"Many of our patients who have MS have symptoms without a visible MS lesion. This does not mean that everything can or should be invisible. "

This is something I have said from the beginning of the forum.

6)

[Quixotic1]

ooops!

6) How long can an MRI remain static before MS is removed from consideration?  We have had people lose their Dx when the MRI has been unchanged for 1, 4, 12 or more months.  Is there a rule of thumb that applies in this?

"No rule. Although we call MS dynamic, my goal is for a stable MRI. "

He misunderunderstood and answered referring to the MS patient on meds.  I meant for the patient that is awaiting diagnosis.  This was frustrating, because I feel that this is one of the most urgent questions right now.  Can MS be thrown off the table as a possible diagnosis because the MRI has been unchanged for a period of time, say over a year?  I rewrote the question for him, but I am not sure he will answer it.

However, his answer does apply to a couple of people whose neurologists wanted to throw out their diagnosis for someone who "was ON meds" and who had a stable MRI.  As Dr. Kantor states, his GOAL is to stabilize the MRI.

I was hoping for a little more information and some education, but he got caught up in my wording.  So it goes sometimes.

Quix

[wonko]

I do hope you'll re-address the static MRI question.  In my above rant (blush, sorry bout that), I mention how this affected me.  It made no sense to me that a concerning MRI finding suddenly turned into no concern, just because it didn't change between Feb. and July.  If you ever uncover a good explanation, I'd love to hear about it.

The facts are now in:  I have Lyme.  I had it before my first MRI, and I had it in between my MRIs, and I had it after my 2nd MRI, but the Lyme didn't cause further visible damage in between the scans.  

Though my diagnosis was thankfully not MS, the negated concern for my MRI lesions due to lack of change was, in my opinion, irresponsible.  If we could get on good authority that this is indeed bunk, it would empower Limbo-ers and dx'ed folks.

[doni54]

Thanks Quix for doing all this for us.  It had to be frustrating trying to get these answers.  I'm having a tired day today and I will have to reread this later and see if I can understand it better.

But, again, thanks for all you do for all of us, you're the best!!!!

Hugs,
doni

[Fluffysmom]

Thanks for all your time, effort and $$ trying to get these questions answered.

It's a shame that so many MS specialists and neurologists have difficulty in understanding patient's questions and clearly communicating concise answers.  Perhaps there is a neurological "limboland", where questions have so many variables that answers are difficult to come by, and vary from doc to doc.

Perhaps there should be a giant convention on Maui for all neurologists and MS specialists to acquaint them with the latest findings, make sure they understand the latest update of the McDonald Criteria (and educate those using only the Barkhoff's criteia), and so on.

If they pass a test showing that they have actually listened, learned, and can interact well with patients, then they will be allowed to go enjoy the beauty and great food; keep 'em on bread and water until then!

I'm joking, of course, but it would be nice if a greater understanding of MS were to become more common.

It's not just neuro's either; I think about how many years my eye doctor and dentist have had to put together this possible Sjogren's that I'm looking at. My eye doctor has been sending off forms for patient assistance program free lubricating drops for my eyes for years.  My dentist has been repairing the damage from my dry mouth for about 10 years and thousands of dollars.  

I plan on taking her some information about Sjogren's, as she's a genuinely kind and caring doctor, and would want to know or be reminded of Sjogren's.  She invested in a machine to screen her patients for the first signs of oral cancer, and gave all established patients a free screening.

Anyway, thanks again for your efforts.  You rock!

Kathy