My Neuro's good explanation about lesions and MRI's

[Heather3418]

Hi all,

I went for my Neurology appointment today and we talked about lesions and MRI's.  I talked to her about some of the things we are all learning, about lesion counting Neuro's and why this counting makes NO sense.

As we already know, it does not matter how many lesions we have, but their location.  As she said today, a person can have ONE lesion and be extremely disabled.  A person can have dozens and dozens of lesions and show very little disability.  Take me for example, I now know that my lesion count is presently at 23 lesions, not 12.  I was right...my latest radiology report of my MRI on December 5th, did NOT report all lesions that we seen.

My MRI of a year ago, was done on a 1.5 Tesla strength MRI which showed 12 lesions in the brain, one in the spine.  My MRI done on December 5 (just a few weeks ago) was done on a 3T.  My Neuro said that most or all of these 23 lesions were probably there a year ago, when I had an MRI on a 1.5T.  The 1.5T just couldn't "see" them.

She said that if the Neurologist is worth his weight in his knowledge about MS, that he will NOT count lesions, but rather look for evidence of disability to match the symptoms the patient is complaining about.  She said that the MRI was a TOOL and nothing more.  Especially when all other testing for mimics of MS have been thoroughly investigated and come up negative. The physical exam, the patients history of relapse and remissions, Lumbar Puncture and more, all put together, can and should be used to give patients an accurate diagnosis.

She said that 3T MRI equipment is on the rise across the U.S.  She feels that with more and more patients being tested using the 3T machines, that more Neuro's are going to see the lesions that they have been seeking.  She believes that most people that are presenting to Neuro's today and having MRI's on the 1.5T machines with no lesions seen, will soon see the lesions that have been "hiding."  She thinks more and more people will get that diagnosis that has been eluding them.  Especially from the Neuro's that count on the MRI's to give them the FULL picture.

She also said that she does not believe there is such a thing as "benign MS."  She said that if that patient has had an MRI on a 3T or higher machine (like the 7T which are few and far between) and still shows no lesions, that the patients physical complaints should be followed up on to FIND the cause.  She said from what I have told her about some of the Neurologists people talk about on the Forum, that they seem to suffer from "laziitis."  She said to RUN don't walk to your private physician to beg for an appointment with another Neuro.  You deserve answers to what is causing your symptoms.

We talked about the value of the DMD's and how they all actually efficient at helping us in our course of MS.  I will post something on that tomorrow.  My body and mind are tired after traveling 40 miles round trip to see her and then trying to make a return at Wal-Mart.  The "return line" was literally out the door.  I'm bushed for now.

Just thought I would post about the talk we had about lesions, while it was still fresh in my mind.  I hope that something in these paragraphs has made some sense to you.

Best Wishes,
Heather

[Momzilla]

Excellent, excellent, excellent.  Bravo, Earth Mother!  Thanks for sharing such top drawer info.

Feel well, my friend,

Zilla*

[Heather3418]

I can positively assure you, that my Neuro does not believe the MS is truly static.  If we were to have MRI's (hopefully on a 3T) everyday, we could see changes occuring within an actual 24 hour period.

Just as the case with Rena.  I do NOT think that her MS is "inactive," based on what my Neuro told me yesterday.  There is no telling what changes are taking place, even on the micro level.

So yes Quix, you were right all along.

Oh for Shell and you...The Copaxone we feel is doing it's job, because my disability level has not changed.  That's what we are looking for.  Like she said, those 23 lesions may have already been there a year ago, before I went on Copaxone.  She said that we will know more when I have a repeat MRI in twelve months (sooner if I am having lots of problems) on the same 3T machine.  It will really give us a better pictures, so to speak of what has been occuring over that year.

So Quix I would say to go ahead and give yourself a pat on the back.  At least that's my take from what my very thorough Neuro has told me.

Heather

[Quixotic1]

Wow, what a great conversation!  Would it be indelicate of me to be very, very gleeful that she has bvalidated what I have been saying for the last almost two years?  I am actually clapping my little hands in glee here!

You do have a great neuro.  Mine explains things out the kazoo, but he does so in a way that seems designed to make me feel like an idiot for asking.

I also want to know how she feels you are doing on the Copaxone.

AND I await the next installment of the conversation.  What great information!

Yesterday I submitted questions that touch on these very topics to Dr. Kantor along with $25.  I'm hoping also for some more info about how the MRI should be used as a tool and not as the dictum from a higher being.

Thanks, Lady!

Quix

[sllowe]

Oh, thank you Earth Mother!!!!!

Looking forward to reading the next write up.

How did SHE say you were doing?

Hope you are resting up,
(((hugs)))
Shell

[nette573]

Thanks from this limbolander!  I appreciate you so much.
Lynette

[flowerfloosey]

I think your neuro just answered all my questions that I have had in the past four years! Since I remain undiagnosed with three positive lps and many clinical signs..this is very valuable info for me.
Thank you so much for being so nice as to take the time to share it with us..especially when you are so tired! Hope you got some answers today that will help you!

Hugs and Thanks,
Cynde aka Flowerfloosey

[Lulu54]

Hi Heather,
I just answered another question about the value of MRI as a followup to a flare and your post helped to reassure me I had given the correct information.  You know I am still learning and struggle with making sure that information that I pass on is right.  Thanks for sharing this important discussion with all of us.  

as always,
Lulu

[biowham]

Thanks for this info, Heather, and it sounds like you have a GREAT neuro.

Bio

[Wobbly]

this is great information, thanks for posting and it's good to hear things will be improving for Dx purposes...we hope... Your so sweet for thinking of us here and spending your time helping.

thanks and take care
wobbly
undx