L'hermitte's without spinal lesions

[kerrtelli]

Hello,
It's me again.  I got a phone call from the neuro saying there were not neck lesions.
But, when i do the chin to chest thing I always get the tingles.
He initially said that this indicated spinal lesion, but there were none.
Anyone care to explain?

Other question.  When does the PROBABLE diagnosis become DEFINITE and do you think the doc will prescribe meds to slow progression?  Just wondering.  He did order Baclofen for me to start taking so that's a start.

Thanks for all of your patience.

Kerri

[COBOB]

I'll see if I can find the links.  The 20-30 invisible lesions number (and sometime larger numbers) have  been used a few times and is related to data Quix has commented on in the past.  Damage to large areas of myelin in White Matter are detectable my T2W,T2*, and FLAIR MRI sequences.  

Microscopic histopathology staining show significant damage in Normally Appearing White Matter and Grey Matter in MS that is not detectable by standard MR sequences.  This observation has held up using special sequences including Magnetization Transfer MRI, MRS and Diffusion Tensor Imaging.  

There is also a problem with MRI images typically being displayed at 512 x 512 pixels.  It causes an averaging error that can cause voxels to be averaged out.  This has been known for many years.  See Magn Reson Imaging. 1994;12(1):33-42.
"Magnetic resonance relaxation time mapping in multiple sclerosis: normal appearing white matter and the "invisible" lesion load"

Bob

[jensequitur]

Neurologists are fixated on the MRI.  Sometimes, even when you have a symptom, they won't move on it without evidence on the MRI.  That's just silly.

An MRI will not give you the whole picture.  Because it takes slices of the brain rather than the entire brain, there's lots of stuff it's missing.  So I'll bet that Bob is right, even without seeing that study he's talking about.

My original neurologist (the one who diagnosed me) heard me talk about my spinal myoclonus, and scheduled me for a .7T MRI.  Of the spine.  Sheesh.  Then when the results came back, he said I had nothing to worry about.  That's when I really started to get worried!  When I came back in with another bout of the same symptoms, he wanted to schedule me for another MRI.  I whipped out my list of clinics in the area with 3T MRI machines, and asked to be scheduled with one of those.  Lo and behold, it showed two lesions - one at T6, and one at T10.  

This is why I'm so on about 3T MRI vs. lower-resolution machines.  If you've got something going on in your spine, it just makes sense to get as much data about it as possible.  Especially if you have a boneheaded neuro.  Even after he saw the evidence that I had lesions in my spine, he did nothing.  It wasn't until I started seeing the MS specialist that I got a prescription for Keppra, which has really improved my quality of life.  As well as make me less afraid to go to work!

[figuerpa]

Kerrtelli,

I have the l'hermittes also, there is something in my t-spine mri but they have not come out and said it is a lesion therefore my ridiculous neuro won't start dmd's for me until there is further proof. I am have a real hard time with the l'hermittes right now. The slightest move of my neck and it shocks my leg.

Good luck and hope the Baclofen works for you.

Paula

[kerrtelli]

Thanks everyone.  The doctor did prescribe Baclofen and I am picking it up tonight.
This will be the first med I am taking regarding my symptoms.  

He said that he will discuss more on our next appt on July 11.

He did call me when he said he would which is a big plus in my eyes.

Every time I post something i learn more.  I am also learning to just keep moving and realize that either way I have no control over this thing.

Today I actually asked for help with my kids.  What a move forward.

Thanks everyone.

[essdipity]

Bob, I have never read about that estimate, or in fact about any level of actual lesion load compared with what shows on MRI. Could you tell us the source of that?

ess

[COBOB]

In the brain, it has been demonstrated that there are up to 20-30 lesions detectable by histopathology for each lesion demonstrated on MRI.  I'm sure the myelin structures of the spinal cord have similar conditions.  While there may be no T2 hyperintensities, that in no way means that there are no lesions.

Bob

[essdipity]

I don't know when probable becomes definite. Many neuros start shilly-shallying at this point and it gets maddening. Or they say you have MS but hold off on for another 6 months before doing anything about it, why I truly don't understand.

Do hope that doesn't happen to you. But there's no reason to expect it will, is there? I wish you didn't have to wait so long for your next appt. Have you tried asking to be moved up?

You can ask for a DMD, even on a 'probable,' and see what he says. Many patients are in that category.

BTW, did you have a thoracic MRI? Considering your symptoms, I hope so.

But try not to dwell too much on all these aspects you can't control anyway. Just do your best to enjoy your kids and your summer, and spend lots of time in that pool.

Hang in there,
ess

[Sidesteps]

My new Neuro is very careful in her choice of words but direct. I think once we get to know each other better, we will have a good doctor/patient relationship. I really respect her direct approach and thoroughness.

One thing she was careful with words. She said "there weren't lesions reflected ON the MRI SLIDES." She explained to be that each of these slides are only a very thin slice; which is why she ordered an enchanced orbit MRI because the slices are much smaller to detect abnormalities.

She also explained that due to this she isn't comfortable YET in prescribing MS medications. I did not ask for them. She was just letting me her boundaries. She will prescribed something when she sees indication of lesions or more definitive proof, somewhere. I think it's important that we understand this. She knows I will question tests and she will respond with answers or if that needs to be evaluated. Ok - it was a good appointment. :)

I think if your doctor is prescibing DMD's he has enough evidence that he feels you have MS. We know lesion load on MRI's doesn't reflect ALL the lesions we have. (Bob will likely post studies.) There is only a little slice of a picture they can take. It's just impossible to see them all so my impression is that he's aware that there is something there, he just can't see it.

[doublevision1]

I also have L'hermitte's which my neuro attributes to a lesion(s) on my thoracic spine, though they've never shown up on MRI.  Not all lesions are visible on MRI, esp on the throacic spine which is difficult to obtain good images of.