No new lesions yet clearly progressing

[heliotrope]

Hi,
I'm just wondering if anyone else has run into this. I just got a new MRI done. My lesion load hasn't changed since I was diagnosed years ago (it wasn't huge then), but I'm clearly progressing. Neuros seem a little stumped - I never get a clear explanation as to what they think is going on. I'm not really expecting one. I know from MS literature that lesion load doesn't fully reflect the disease course.
But... since it's used to "measure" MS, I'm wondering a)does anyone else have this pattern and b)how do you get it properly addressed in treatment? I've had second opinions try to write off MS because of it (I've had repeated flares, so the diagnosis isn't really in question). I'm mostly curious.

[Dreams008]

I am in the exact same boat. I was diagnosed in 2012 and have had about 3 MRIs since, my latest being August 2014. My lesion load has not changed and I never have lesions that are enhanced. My symptoms keep deteriorating. I've never really stabilized, though I hit plateaus. My doctors have diagnosed me as having Primary Progressive MS, where symptoms get worse, but lesions remain unchanged. It's a hard diagnosis to hear, but time heals, and I've learned to accept it at the young age of 35. My neurologist still wants me getting yearly MRIs. My next is this coming August 2015. He said he'll do backflips if he sees a change. That means I can start treatment again, because as of now, treatments are ineffective for PPMS. Too many risks involved with side effects for drugs that have not been proven to stop the progression of PPMS. You might want to discuss the possibility of this category with your neurologist.

[pennstater]

My MRIs have been stable, but I had relapses and was progressing. Thankfully, neuro treated the symptoms and not MRIs. I am on 3rd DMD, and Tysabri actually decreased size of largest lesion at C-6, which had remained same size for 7 years.

I wish the medical community knew why, but the one theory is that the damage has been done, and also that MRI technology is not sensitive enough.

There are studies done with functional MRIs (fMRI), which does show lesions appearing and disappearing, as well as axon and neuron damage. Traditional MRIs did*not pick up these changes.

[Marco]

Based on what you said, you have both progression and relapses. Have your neurologists talk to you about changing or starting MS medications? When determining how effective a MS medication is, neurologist often use the RPM scale. RPM stands for relapses, progression and MRI (changes). If you are having breakthrough relapses, significant increases of progression or unabated lesion activity a change in treatment may be warranted. Are you seeing your neurologist for these "repeated flares?" Are you keeping a symptom journal?

A few quick points:

• Remember you can have new symptoms without lesions and new lesions without symptoms.
• MRIs are also a point-in-time snapshot and can miss any number of lesions between examinations.
• Existing patient MRI technology is not accurate enough to detect all lesions. Brain lesions are easier to detect, but there is still an error rate.
• You can also ask your current neurologist if they have another doctor they can send your files to for second opinion.

The lesion video depicts just how quickly lesions may form and disappear:
http://www.msdiscovery.org/news/news...more-meets-eye

[heliotrope]

Based on what you said, you have both progression and relapses. Have your neurologists talk to you about changing or starting MS medications? When determining how effective a MS medication is, neurologist often use the RPM scale. RPM stands for relapses, progression and MRI (changes). If you are having breakthrough relapses, significant increases of progression or unabated lesion activity a change in treatment may be warranted. Are you seeing your neurologist for these "repeated flares?" Are you keeping a symptom journal?

A few quick points:

• Remember you can have new symptoms without lesions and new lesions without symptoms.
• MRIs are also a point-in-time snapshot and can miss any number of lesions between examinations.
• Existing patient MRI technology is not accurate enough to detect all lesions. Brain lesions are easier to detect, but there is still an error rate.
• You can also ask your current neurologist if they have another doctor they can send your files to for second opinion.

The lesion video depicts just how quickly lesions may form and disappear:
http://www.msdiscovery.org/news/news...more-meets-eye

I should note: I had several relapses consecutively early on, but was pulled off all medications within two months (bad reactions). I had no meds for four years and random mild relapses over that period. I hadn't had a clear relapse for over a year until last month, although my progression was steady (was on meds for a few months and then pulled off). This is a new neuro, so they're not really concerned with a second opinion.
Thanks for the comments.

[Kimba22]

Hi heliotrope,

The amount of gray matter damage seems to be related to disability:

"MS has long been considered an inflammatory disease of the brain’s white matter, where myelin — the fatty, protective sheath that surrounds nerve fibers — is most abundant. But the magnetic resonance imaging (MRI) study showed smaller amounts of myelin can also be found in gray matter, which is made up of mostly nerve cells and serves as the brain’s information processing center.

While the amount of myelin in gray matter is small, it is very important to proper function because it protects the nerve fibers that connect different parts of the brain. "However, the clinical significance of the myelin loss, or demyelination, in gray matter has not been established because of the absence of appropriate imaging methods."

Using a special MRI technique called macromolecular proton fraction (MPF) mapping, gray matter demyelination was found to be much more advanced in patients with secondary-progressive MS, and very strongly related to patients' disability." http://www.foxnews.com/health/2014/0...r-myelin-loss/

"Multiple sclerosis is characterized at the gross pathological level by the presence of widespread focal demyelinating lesions of the myelin-rich white matter. However, it is becoming clear that grey matter is not spared, even during the earliest phases of the disease. Furthermore, grey matter damage may have an important role both in physical and cognitive disability." http://www.nature.com/nrn/journal/v1...l/nrn3900.html

[Poolwatcher]

I have had MS since 1998 and have never had lesions on the MRI. Not even recently with a major attack.... Two Neurologists confirmed the diagnosis. A good doc treats the patient, not the lab tests.

[rdmc]

Good read, it touches on progression despite unchanged MRI.

http://www.wheelchairkamikaze.com/20...rosis-and.html

[aisunnen]

Repetitive MRI's?

My neuro, who I think is brilliant and compassionate, has not ordered an MRI for me for more than a year. I'm with him! Of course the MS centers love to have them (revenue!), but I don't see the point any more. My MS is progressing, slowly but inexorably, towards more limited mobility, so what do I gain by hearing that lesions are stable or larger, more numerous, etc? I do what I can to strengthen and maintain flexibility, keep my mind in gear, and improve balance, but I prefer to avoid suggestions that my brain is in meltdown. Am I in denial? Not hardly. What do you think?

[Marco]

My neuro, who I think is brilliant and compassionate, has not ordered an MRI for me for more than a year. I'm with him! Of course the MS centers love to have them (revenue!), but I don't see the point any more.
What do you think?

For me, MRIs are a data point and hopefully a non-event. While MRIs are not perfect, I'd rather have them, than not and have a better clue about the extra holes in my head. I have mine annually, but now that I have stabilized on a medication I wouldn't mind extending testing to every 2 years. Here are a few reasons why I believe patients should have regular MRIs.

• Without biomarkers for MS, MRIs are one way that neurologists can help gauge progression. MRIs can help monitor things like brain atropy, overall lesion burden, and provide a comparison to previous studies.
• A good percentage of lesions are asymptomatic so damage can occur without your knowledge.
• Significant MRI activity may also indicate more aggressive treatment is required to reign MS try and reign MS back in.
• If you are on a MS medication then most neurologist use the RPM (relapses, progression and MRI) to estimate the effectiveness of your medication. With a dozen available medications there's hardly a reason to be on one that is not working well for you.
• If you are on a medication with the potential side effect of PML; a MRI might give you an early warning and potentially save your life.

I wish you all well ...