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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
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
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
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
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
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
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
I'm here all day, folks. Don't forget to tip your server.
Bio
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
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
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
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
MEDICAL PROFESSIONAL
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.
It depends. It seems very unlikely however, with the normal MRI, yet with multiple symptoms. Oligoclonal bands are not specific for MS.
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