Questions about testing for MS Diagnosis

[Quixotic1]

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

[Melissa072]

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

[Dr. Daniel Kantor, MD]

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).

[Dr. Daniel Kantor, MD]

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.).

[Quixotic1]

Correction:  On the case mentioned above the period of time without change in the lesions on her MRI is actually only 6 months.  

Q

[flowerfloosey]

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

[flowerfloosey]

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