Multiple Sclerosis (MS) Expert Forum
Questions about testing for MS Diagnosis
About This Forum:

Welcome to the Multiple Sclerosis (MS) forum. Questions will be answered by medical professionals and experts.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
This expert forum is not accepting new questions. Please post your question in one of our medical support communities.
Blank Blank

Questions about testing for MS Diagnosis

Dear Dr. Kantor, Welcome to the MedHelp MS Community.  I am one of the Community Leaders and was a pediatrician before being disabled with MS.  For each of the questions I am presuming that the history and physical are very suggestive of MS  and that the MS mimics have been properly ruled out.  "MRI" includes imaging the brain and spinal cord.

A couple of times you have said that: " With repeated 3T MRIs and negative LP results it is extremely unlikely that a person would have MS. "

1) We have a lot of members who have been told by their neurologist that a single negative MRI (of any strength) is proof-positive they do not have MS.  Would a single negative 3T MRI, but very suggestive H&P still cause you to keep MS high on your list?  What intervals do you repeat the MRI when the patient continues to have what appear to be relapses or is still symptomatic?

2) We have a few members who have repeatedly positive LP results, but who have had a negative MRI.   In this situation how do you deal with the negative MRI?

3) Do you do an LP routinely or do you use it only when the MRI does not provide enough evidence?

4) We have had several members of the forum lose their diagnosis when the LP was negative, even when the MRI was suggestive of MS?   Can the LP really be a deal-breaker?

5) Aside from evidence needed for diagnosing MS, do you feel that lesions can be "invisible" to the MRI?  That they can be too small for the resolution of the machine, but still cause symptoms?

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?

Quixotic1
Related Discussions
669758_tn?1242334351
1) We have a lot of members who have been told by their neurologist that a single negative MRI (of any strength) is proof-positive they do not have MS.  Would a single negative 3T MRI, but very suggestive H&P still cause you to keep MS high on your list?  What intervals do you repeat the MRI when the patient continues to have what appear to be relapses or is still symptomatic?

Every doctor is different, but if I am working someone up I m ay repeat the MRI in 3 to 6 months depending on the cost to the patient and the symptoms.

I am not sure that there is anything that is "very suggestive of MS." MS is a rule-out diagnosis -- you need to rule-out a long list of diagnoses which mimic it.

2) We have a few members who have repeatedly positive LP results, but who have had a negative MRI.   In this situation how do you deal with the negative MRI?

This depends on what positive means -- since there is no specific "MS test." Other medical diagnoses can cause some "positive" LP results.

3) Do you do an LP routinely or do you use it only when the MRI does not provide enough evidence?

There are two reasons why I do LPs:

1. If the patient wants it (a lot do surpringly to "know for sure" -- even though you know it doesn't always rule MS in).

2. 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.

4) We have had several members of the forum lose their diagnosis when the LP was negative, even when the MRI was suggestive of MS?   Can the LP really be a deal-breaker?

No.

5) Aside from evidence needed for diagnosing MS, do you feel that lesions can be "invisible" to the MRI?  That they can be too small for the resolution of the machine, but still cause symptoms?

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.

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.
26 Comments
Blank
195469_tn?1388326488
Excellent, excellent questions, Quix......
Blank
147426_tn?1317269232
I hope you do not feel that my questions might catch you in a legal pitfall.  I tried hard to phrase them so you would offer just your rule of thumb or any accepted consensus.

These questions are important to the MS forum because of how often they come up.  I feel that people with MS are being left without treatment by inappropriate rules.  Just today another member is possibly facing the removal of MS as the diagnosis because a year has passed without change on her 1.5T MRI.  The MRI shows lesions that have not changed and the doctor states this makes MS extremely unlikely.

Personally, my 3T MRI remained unchanged for 2 years,before diagnosis.  I was diagnosed nonetheless.  My neurologist was not bothered by the period without change.  My diagnosis has since been validated by other findings.  I really want to know if a period of time without change on the MRI is truly a valid criterion for refecting the diagnosis.  This has come up dozens of times.

Here is the link to the new thread discussing this:

http://www.medhelp.org/posts/show/735607

I truly hope you will answer and give us any information you feel comfortable giving.

Quixotic1
Blank
147426_tn?1317269232
Correction:  On the case mentioned above the period of time without change in the lesions on her MRI is actually only 6 months.  

Q
Blank
147426_tn?1317269232
By "suggestive of MS" I meant the same thing you meant when you said, "if it quacks like a duck, smells like a duck" etc. then it is probably MS and we can rule-out other diagnoses with lab work. "  

I apologize.  On the last question I was unclear, trying to stay within the character limit for questions.  Pre-Diagnosis we have had numerous patients whose physicians discarded MS as a possible diagnosis when their MRIs remained unchanged for months to a year.

In your experience is it possible for the MRI appearance of MS (not being treated with a DMD) to remain unchanged for long periods - say of a year or more?

Thank you for your time.

Quixotic1


Blank
572651_tn?1333939396
Thanks to both of you for this conversation.  Now if only we could know that every doctor thinks like you do .......

my best,
Lulu
Blank
147426_tn?1317269232
Another clarification you asked for: "It depends on what positive (LP) means..."

I meant the positive definition from the revised McDonald Criteria - either a positive IgG Index or 2 or more oligoclonal bands.  What do you consider a "positive" LP to mean?  I understand that both of those can be seen occasionally in other disease processes.  But, if there are no results that would "sway you toward" a diagnosis of MS, then why would you ever do one at all?  I found your reply to be somewhat unclear.

Quix
Blank
Avatar_f_tn
This whole process if dx ms is very confusing.

I have had ms symptons since June 2007  that remain with me.

And even prior to that date I had burning, face pain and dizziness.

I have had 2 mri's on a 1.5 telsa of brain and spine all normal and a negative L.P.

I am to go for repeat mri next appointment on a 3 telsa, if it is still normal does that make ms unlikely or I can still have it??????????????????????????
Blank
147426_tn?1317269232
I will try again on the most urgent question.

In your knowledge, can a person with MS have a stable MRI for:

6mo?

12mo?

2 years or longer?

Many of us would appreciate some education on this question.  As you can see from the question above, it comes up frequently.

Thank you,

Quixotic1
Blank
147426_tn?1317269232
I will try again on the most urgent question.

In your knowledge, can a person with MS, who has not been treated with a Disease Modifying Drug, have a stable MRI for:

6mo?

12mo?

2 years or longer?

Many of us would appreciate some education on this question.  As you can see from the question above, it comes up frequently.

Thank you,

Quixotic1
Blank
669758_tn?1242334351
MS can certainly be stable (that is our goal) as can the MRIs.

I agree with the LP comment and this is why I rarely perform them. Even if there are no oligoclonal bands or elevated IgG index (either one makes a "positive" LP) MS is still a possibility.

LPs are more useful when looking for other causes (infections etc.).
Blank
98474_tn?1240108874
Am I right in assuming from your above comment that one can have a three positive lps.(normal IGG index )and all other causes can be ruled out and have no leisons and be dx with MS?
Thank you for your comments on this post.
Cynde
Blank
669758_tn?1242334351
Please rewrite the question -- it looks like you said:

1. 3 positive LPs -- but then you wrote "normal IgG index."
2. No lesions on MRI

Blank
98474_tn?1240108874
additional info..I am talking about 12 o-bands on three separate lps, no leisons seen on 3 brain mri's and lots of clinical sx.
Blank
669758_tn?1242334351
Is MS possible?

It depends. It seems very unlikely however, with the normal MRI, yet with multiple symptoms. Oligoclonal bands are not specific for MS.
Blank
98474_tn?1240108874
Thank you for responding to my question. I am sorry it was not written very well. What I am asking is:

1. All other  ms mimics ruled out
2.With multiple clinical sx of ms
3. with 3 lp's with 12 bands present in csf and not in serum
4.neg mri's on T2
5.progression of disability ie..can't walk for any distance or stand for any length of time over a 4 year period

What is the percentage of patients that have ms or would convert to ms

Thank you again for your time on this forum and for answering our questions
Cynde
Blank
147426_tn?1317269232
I am really not trying to flog a dead horse here.  In your answer about stable MRIs you state that this "is your goal."  That implies that it is your goal "with treatment."

My question is whether "untreated MS" can have a stable MRI for any extended period of time.  Can the lesions that have been seen be unchanged for 6 months, 12 months or more?

Quix
Blank
378497_tn?1232147185
Quix, I think I just saw the horse kick its leg a bit. ;-)

I'm here all day, folks. Don't forget to tip your server.

Bio
Blank
Avatar_f_tn
I still don't understand.  LOLS  Sorry everyone.

I've had ms symptons since June 2007, and even before then.

July 2007 normal brain /spine mri  no contrast
December 2007 repeat mri 1.5  telsa no contrast   normal again

Jan 2008 negative L.P.

What are my chances of still having ms, I'm still suffering symptons and the tinging returns in the heat.

Melissa
Blank
147426_tn?1317269232
To everyone who has written and thanked me for trying to clarify my last question - it is clear that the doctor does not wish to deal with it further.  I am sorry I was not able to help.

On the patient MS forum we have a dozen or so people who have the diagnosis of MS and who have had a year or more of stable MRIs without use of a DMD.  For several, the period of MRI stability was before the diagnosis.  For example mine was unchanged for 2 years and only changed after my diagnosis when I stepped up from a 1.5T to a 3T.  Heather had an unchanged MRI for several years as have had several others.  So we do know that it "can" happen.  These, though, are what is known as anecdotal evidence (someone's story).  I was hoping that a professional who has seen thousands of cases would be able to tell us if this happens with much frequency.

We have had several people either lose the diagnosis of MS based on a static MRI or who have had MS removed from consideration after 1 month, 4 months or a year of no change in their lesions - in size or number.  If these people had not been discharged from care and remained under watchful observation or even active work up, it would be one thing.  People want reassurance that, after thinking they have MS, that they really don't.  Or they want to know if MS is rightly off the table and they don't need to worry again about timely treatment with a DMD.  The people I have talked to just want some direction and advice.

At no time do I mean this in a legal sense.  I realize the pitfalls of theoretical questions.  I, too, have been deposed by lawyers.  But, expressing what one has found within their field of expertise and experience is hardly the same as declaring a Standard of Care.

My stance, which is the only one I am left with as Dr. Kantor seems not to want to discuss this, is to say that MS is a highly variable disease.  While I believe that it is always active, it may be active in ways that are not shown by conventional MRIs.  If the person's symptoms and exam continue to be suggestive of an active demyelinating process, I do not believe that a static, but positive MRI should negate consideration of MS.  How long an MRI can be static and for it still to be the MRI of someone with MS?   I have no idea.  I was hoping for help from our expert.

Further, I know that there "is" such a thing as a clinical picture that is "very suggestive of MS."  There are certain combinations of historic patterns and exam findings that make a physician place MS higher rather than lower on the list of differential diagnoses.  Afterall, the series of guideline criteria which have been in place for the last 40 years have always allowed the diagnosis of RRMS to be made on the basis of the patient's history (2 or more distinct attacks of symptoms suggestive of demyelination) and neurologic exam (two or more distinct abnormalities on neurologic exam that indicate damage in separate areas of the central nervous system).  Not only can there be a "very suggestive picture," there can actually be a "diagnostic" picture of MS.  

As Dr. Kantor says, the MRI is only a tool.  A good physician treats the patient - not the lab result.  If a person has been diagnosed with MS and continues to have symptoms and neuro findings that support the diagnosis, I can't see the wisdom of believing an imperfect tool over what is happening in the patient.

Quix
Blank
98474_tn?1240108874
Thank you so much for your post and for trying to get answers for so many of us that fall into various catagories of dx.

I can't help reminding myself that people were dx with MS before the advent of the MRI. We know that not everything is known about this disease and so I believe that someday we will get the answers we all crave.

I have a friend with positive MS who after a couple of years on copax, her MRI's show no lesions. When my pcp first found out about my initial dx of MS...she told me that she had been to a seminar where they showed actual film of leisons coming and going during an MRI. I wish she was still in practice so I could ask her more about that. She moved away.

The fact remains that the psycological effect of this whishy washy criteria is devastating to those of us suffering from this uncertainty. Not only dealing with the symptoms but the depression.

What can we do to change this?

Thank you again Quix and Dr Kantor for your time.
Cynde aka flowerfloosey
Blank
669758_tn?1242334351
I can answer that question about the video that you refer to.

It is not a real-time video, but rather a series of one person's frequent MRIs over time and so it becomes a video and it shows the dynamic nature of MS lesion (as we have discussed in the past).
Blank
98474_tn?1240108874
Thank you for clarifying this for us and for explaning the video.

I have a  couple of different questions that I hope you can help me with.

1.What is the best way for a patient to approach an appointment with a large teaching hospital Neoruologist. I tend to want to lead the discussion and want to be heard so I talk too much and go in so many different directions. Should there be time alloted for me to "tell my story".

2. If this is not MS, how do I get the doctor to listen to my symptoms enough to see if this all could be some other dx?

3. What is the best approach to getting my symptoms, ms or not addressed to get some kind of help to ease them?

Since I have an appt in late Feb with the Mayo Clinic in Az. I want to get the most out of this expensive attempt to get some answers as to my diagnoses.Any help would be appreciated from a Doctors perspective.

Thank you  again Dr Kantor,
Cynde
Blank
98474_tn?1240108874
If MS is unlikely in the case of very positive o-bands with no leisons found over time on brain and spinal cord, what could the dignoses be? I have seached and search to find a COMPLETE list of what can cause them and cannot find one. With all the common reasons ruled out thru tests and blood work, and knowing that my spinal fluid is NOT NORMAL, (the words of my first neurologist) what is the next plan of attempting to find the answers with worsening sx? Loss of ability to stand and walk?

If I fall into the 3% of people in my situation that have ms..how do you find out if you are in this group if no doctor is willing to put you there?

Thank you again,
Cynde aka Flowerfloosey
Blank
Avatar_f_tn
I am in the same boat, several ms symptons and 2 clear mri's of brain and whole spine and a negative lumbar, on a 1.5 telsa and no contrast.

My symptons are ongoing and the tingling returns in my feet in the heat.

What should I do?

Have had symptons since June 2007 and even before then.

It is ruining my marriage and everything, I can feel these symptons but no one can see them.  

Melissa
Blank
739070_tn?1338607002
Hi,
I saw your posting regarding a complete list of differentials (different diagnoses for similar symptoms)  for MS. Have you seen the article on emedicine, Brain, Multiple Sclerois:Overview.? eMedicine almost always includes a differential list and some on the list have active links to other articles. Hope this helps.

Rendean
Blank
Continue discussion Blank
MedHelp Health Answers
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
RSS Expert Activity
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank