I’ve read that sometimes signs of MS can be “invisible” on an MRI for various reasons: old areas of damage, MRIs performed without following specific “MS Protocols” (size of slices, strength of MRI machine, etc.), abnormalities that are seen diagnosed as normal “due to age,” etc., and that a general neurologist may miss signs that an MS specialist would catch.
I ask this because at age 29 I became very, very ill. Up until that time I had remarkable health. Symptoms included vertigo (w/nausea), horrible headaches, extreme weakness and fatigue, difficulty swallowing any food, and excruciating traveling pains throughout my body. When taking a shower, for example, the water hitting my skin felt like shards of glass. My heart would race and I would get chest pains but cardiologists said my heart was fine. I would wake up with horrific muscle spasms, especially common were my hands. My symptoms progressed to where my vision would go dark and I would feel close to fainting. I could not hold my urine. My doctors ruled out Hepatitis, Lupus, HIV, Syphilis, and various other conditions. Ultimately I was diagnosed with Depression/Anxiety/Fibromyalgia/Chronic Fatigue Syndrome. It took 12 years for a doctor to think of ordering a brain CAT scan, results which were reportedly normal.
After around 14 years, I was treated for late-stage Lyme disease & associated co-infections (as I did have a bull’s-eye rash in the beginning) by a Lyme specialist. But after ten years of treatment, despite some improvement, my PCP urged me to discontinue treatment.
Now, in addition to my typical flare ups, I am experiencing visual problems. Double vision/eye muscle weakness; episodes of eye pain that can last for days and leave me with blurred vision in that eye; and most recently “light shows” - streaks of light in my upper and lower visual field that do not correlate with my headaches. Two ophthalmologists can find nothing wrong within my eyes. But both are baffled as to why they can’t seem to correct my double vision with prism lenses.
Last year my son, at age 31, was hit with visual problems, blacking out/near fainting spells, severe vertigo, fatigue and leg weakness. He was taken to the ER and an MRI was immediately done finding “innumerable lesions” throughout his brain. He was diagnosed with MS. Upon hearing this, I asked my PCP & Neurologist for a brain MRI for myself. The results were reported to be “normal for patient’s age,” other than an area that was possibly an inconsequential small arachnoid cyst.
So I am wondering, since some are finding MS may “run” in families, could it be possible I have MS, but perhaps my continued symptoms are from nerve damage from old lesions? Or perhaps it is the Lyme flaring up since I have been off those meds?
MRI is a very powerful tool in diagnosing and monitoring disease activity in MS patients. It provides the opportunity to understand the extent of the disease in terms of the number and location of lesions, but also helps us understand the impact of brain loss that occurs as a consequence of disease progression and normal aging.
Brain loss can be seen as "black holes” as well as brain atrophy. With standard MRI sequences, brain atrophy is usually not reported as it is difficult to quantify with standard MRI techniques. Brain volume can be quantified with a variety of techniques that are usually done in research studies. As an example, we are conducting a study at the University of Colorado that will longitudinally measure brain volume in MS patients on highly effective therapies and compare with brain volume on healthy controls.
This study will allow us to understand the extent of brain volume loss in MS patients and compare with similar individuals without MS that are simply going through the normal aging process.
In addition, other MRI techniques, like MTR, allow us to identify pathology (demyelination) in areas of the brain that appear normal to the naked eye. This technique coined the term “normal appearing brain”. This is likely the reason why patients clinically deteriorate, however, MRI might not be able to capture pathology over time.
Augusto Miravalle, MD
Associate Professor of Neurology
Vice Chair, Education
Director, Neurology Residency Program
Faculty Member, Rocky Mountain MS Center
University of Colorado Denver School of Medicine