Brain volume loss instead of lesions? Anyone?

[SuburBint]

I recently gained access to all of my radiology reports online and noticed something that I hadn't really put together before.

In the 13 months between my regular post-tumor brain MRI (August 2013) and my why-aren't-my-arms-working brain MRI (September 2014,) I had apparently lost brain volume in the left portion of my cerebellum, something which had never been noted on an MRI report before.

I am naturally furious that none of the three physicians to whom this report was sent seemed to think it their job to mention to me that my brain is apparently eating itself, but at this point my real question is this:

Has anybody experienced this as a finding on an MRI that was void of lesions but it still turned out to be MS? I am fully intending to use this as ammunition to throw in the face of Dr. "no lesions, no MS," and tell her that since she failed to tell me that my brain is shrinking, she will be giving me a referral to the neurologist of my choosing, but I am just curious to know if anyone else has been through anything similar to this.

Thanks to all who read & answer!

[TinaP303]

I can understand you frustration and even anger at not being told something as important as the shrinkage by three different doctors!! Has anyone given you any medical reason for that? And yes, I'd be looking for a neurologist willing to tell the truth, good, bad or ugly.
No, I've not had, or heard of that kind of shrinkage of brain tissue. I really hope you get some kind of answers, soon.

[mjan]

First let me say, I am sorry for all you are going through. I too have "shrinkage" of my brain of atrophy. When I initially met my 1st MS neuro, his PA came in the room first and said, Do you know you have brain atrophy? I thought, no, but nice to meet you too. LOL I have had 4 neuros and not one, even the first one I saw EVER mentioned it to me. My own chiropractor was concerned, but no one else. And I never mentioned it to anyone either. Seems that is not unusual (?) for folks with MS to have some atrophy earlier than what is normal with age. Dang.. maybe I'll bring this up to my newest MS neuro this week, that is IF I remember !! LOL Warmly, Jan

[jreagan70]

Well, first of all, atrophy isn't the brain "eating itself." So that's a scary image you can let go of.

Even if you were to have MS, that still isn't the brain "eating itself." Another reason to let go of that image.

MS is a disease of inflammation and demyelination. Brain atrophy can be caused by any kind of injury. It can't just be assumed that atrophy is caused by demyelination, and premature to assume that your cerebellar atrophy was caused by demyelination.

Atrophy that is significant enough to show up on an MRI and affect an entire half of the cerebellum would have to be caused by something else that is of corresponding significance. If your cerebellar atrophy were caused by MS, there would have to be evidence of demyelination that is of corresponding significance. That means there would have to be lesions on your to explain atrophy caused by demyelination. Significant atrophy wouldn't come from microscopic lesions.

The identifying characteristic of "multiple sclerosis" is literally "multiple areas of sclerosis." Atrophy doesn't meet that definition. And, because brain atrophy isn't a part of the diagnostic criteria, it won't help in diagnosing MS.

In very rare cases (~5%), people are diagnosed without evidence of lesions at the time of diagnosis. But virtually all of them are diagnosed with some kind of evidence of demyelination. You can't be diagnosed with a demyelinating disease without evidence of demyelination. Atrophy isn't demyelination.

Since brain atrophy can come from any injury, a brain tumor with subsequent surgery is a prime candidate to explain atrophy of the cerebellum if there are common nerve tracts that go through both areas. It makes diagnostic sense to rule out a known possible cause of brain atrophy before assuming a cause for which there is no current evidence.

So, bottom line: Atrophy alone isn't evidence of demyelination, let alone evidence of MS.

And even if you were to find someone who says they had atrophy without CNS lesions and was diagnosed based on atrophy without lesions, a single, unverified, anecdotal story that doesn't contain other evidence of demyelination doesn't have a snowball's chance in Hades of superseding the international diagnostic criteria for MS. It will never serve as evidence of anything to "throw in anybody's face" as evidence of MS. It might, though, get you dismissed from a doctor's practice for being a loony.

[AMJ]

SuburBint

You may find the following excerpts interesting. It has only been in the recent years that researchers have been looking at grey matter loss in ms. Research is ongoing, but just moves too slowly for those of us with MS.

From webmd.com

TUESDAY, April 23 (HealthDay News) -- Atrophy of a key brain area may become a new biomarker to predict the onset of multiple sclerosis, researchers say. If so, that would add to established criteria such as the presence of brain lesions to diagnose the progressive, incurable disorder.
Using special MRI images, scientists from three continents found that the thalamus -- which acts as a "relay center" for nervous-system signals -- had atrophied in nearly 43 percent of patients who had suffered an initial neurological episode that often comes before a multiple sclerosis (MS) diagnosis.

From my-ms.org

Principal Cause of MS Cerebral Atrophy is Unknown

MS is a chronic inflammatory neurodegenerative disease of the central nervous system (CNS) that affects the brain and spinal cord. It's the most common chronic neurologic disease in young people and adults in Europe and affects approximately 2.5 million people throughout the world. The study was published in the journal Archives of Neurology (66(2):173-9) and was carried out by the team of Dr. Pablo Villoslada at the University of Navarre. Last December, these researchers joined Hospital Clínic, Barcelona-IDIBAPS. Until now, it was thought that the atrophy seen in the brains of patients with MS was caused by the plaque in the white matter. The new results show that these plaques explain only 30% of the lesions.

Until now it was assumed that MS predominantly affected myelin, a fat that sheaths the nerves. It was thought that the plaques that form in the myelin were directly responsible for the atrophy of the grey matter. This study was designed to determine whether the loss of volume–atrophy–in the brain’s structures was related to the presence of lesions or cuts in the nerves connected to them.

The researchers analyzed the brains of 81 people (61 with MS and 20 healthy people) using magnetic resonance imaging (MRI) and a morphometric method (volumetry). The study focused on the optical pathway, starting with the hypothesis that lesions in this part of the brain, and in no other, correlate with atrophy of the occipital cortex and the lateral geniculate nucleus (LGN), the main centers for processing visual information. The results indicate that the lesions in the white matter of the nerves originating in the LGN explain up to 28% of the variation in volume. Atrophy of the occipital cortex did not correspond to the presence of lesions in the optical pathway, probably because it is associated with many other pathways.

Thus, although the sclerotic plaques in the nerves contribute significantly to the atrophy of the grey matter, the remaining 72% must still be explained. The data suggest that other neurodegenerative processes are involved. Because atrophy of the grey matter is the main cause of the progressive form of the disease and its severe sequelae, it's important to gain a better understanding of the principal mechanism of the damage, apart from the classic plaques, in order to be able to apply this knowledge to treating the disease.

[KatieAgain]

Loss of brain volume can come from anything. Everyone will experience it at some point in their lives unless they pass away before 30 years old.

The biggest cause of the loss of brain volume is aging. Especially those entering their 60s and beyond.

Brain Volume loss can also indicate disease, trauma or infection. You had a couple of benign brain tumors and I am not a doctor, but maybe that is the cause. I would ask if the removal of those tumors could have cause some residual side effects such as what you are experiencing.

I personally would also explain to my doctor that I had read the reports and ask specifically what could be causing the brain volume loss.

Reading medical reports can be very scary. Its a different language. Hopefully your doctor can clear all this up for you and I hope you get the answers that you need very soon.