Reasons You Might Need Another MRI Scan

Before I was officially diagnosed, I had undergone several of these tests multiple times. For example, I had six MRI scans between the first time my vision “seemed off” in 1994, the time I was temporarily blind in 2000, and when I lost the use of my left hand and arm in 2005. Since my diagnosis I’ve had eight additional MRI scans, each including one to three areas of the central nervous system: brain, cervical spine, or thoracic spine.

Only a few times have I questioned, “Do I really need another MRI right now?”

Top three reasons you might need another MRI

Confirm diagnosis. To diagnose MS, there must be objective evidence that damage to myelin — the fatty substance that covers and protects nerve cells — occurred in two different locations of the central nervous system at two different points in time. The use of gadolinium— a contrast agent injected into a vein during an MRI scan — can help the radiologist distinguish between new “active” lesions and old lesions.

If both active and non-active lesions are seen on scans conducted during a single session, then MS diagnostic criteria may be met. However, it is more likely that repeat MRI scans will be needed to demonstrate that multiple (many) scleroses (scars) have occurred at different points in time and confirm a diagnosis of MS.

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Why Do I Need To Get Another MRI Scan?

The Process of Being Diagnosed with Multiple Sclerosis

Being diagnosed with multiple sclerosis (MS) is a multi-step process that can take anywhere from days to years. Unfortunately, MS is not a condition where you walk into your primary care doctor’s office because of unusual symptoms, and you walk out of the office with a definitive diagnosis. Reporting your symptoms to your doctor is only the first step.

Step one: Early symptoms and preliminary tests

The neurological exam is the first step in trying to solve th

e mystery as to whether MS might be the cause of your symptoms. The doctor will look for signs to indicate that something may not be functioning as expected within the central nervous system (CNS) that includes the brain, spinal cord, and optic nerves.

To help eliminate potential causes of symptoms, your doctor may order some preliminary blood tests to rule out conditions such as vitamin B12 deficiency, lupus, autoimmune disease, Lyme disease, syphilis, or HIV. If the results come back normal, your doctor may then order an MRI of the brain and/or spinal cord.


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How Long Does It Take To Be Diagnosed With MS?

MS Symptoms and MRI Lesions Don't Always Match

One of the most mysterious things about multiple sclerosis (MS) is the wide variety of symptoms and lack of uniformity in disability progression. Although some symptoms can be traced to lesions in specific areas of the central nervous system, including the brain, spine, and optic nerves, there is often a disconnect between relapses, lesions, and disability. Little about MS follows predictable patterns.

In the MS community, I’ve heard lots of questions regarding this apparent disconnect. People with MS are sincerely trying to make sense of the disease and find an explanation for their unpredictable experiences. Here are some common questions and potential explanations.

“I had a relapse, but my annual MRI didn’t show any active lesions. Why not?”

Magnetic resonance imaging (MRI) is helpful in the diagnosis of MS because it can detect inflammation and demyelination that primarily affects white matter in the brain or spinal cord. Active inflammation and new demyelination show up in MRI as gadolinium-enhancing lesions. As inflammation resolves and the body works to repair itself, lesions will no longer enhance. Researchers have indicated that it could take monthly MRI scans to catch these lesions as they come and go.

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Why Don’t My Lesions Match My MS Symptoms?

How To Have An Easier MRI Experience

MRI scanners use strong magnetic fields to generate images. The standard imaging protocol in MS suggests use of a minimum 3 Tesla (3T) "closed machine" for best results. The imaging sequences focus on the white matter and grey matter of the brain and/or spinal cord before and after venous administration of a contrast agent, gadolinium, to enhance certain anatomical features.

Here are some things you need to know to make your MRI experience less stressful and more successful.

Before the MRI

Dress comfortably. Because the MRI scanner is basically a large magnet, you must not wear clothing with lots of metal rivets, buttons, or zippers. To avoid the need to disrobe and put on a hospital gown, I prefer to go to my MRI appointment wearing sweatpants and a comfortable T-shirt. That way, the only clothing I have to remember to take off in the dressing room is my underwire bra. Don’t worry, the technician will double-check that you aren’t wearing anything that would interfere with the MRI.

Remove body jewelry, watch, and wallet. Consider leaving your jewelry at home for safe keeping. You will be asked about metal in the body — such as a pacemaker, cochlear implants, joint replacements, or metal fragments — because in certain circumstances, an MRI can cause damage to the equipment itself or to body tissue when metal is involved. Some metals, such as titanium clips from a breast biopsy, do not pose a problem.


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What It’s Like to Have an MRI Test for MS

What is NEDA?

Since the first disease-modifying therapy (DMT) for multiple sclerosis (MS) was approved by the FDA in 1993, medications for MS have been developed to slow down the disease. Many have been shown in clinical studies to reduce the frequency of relapse and slow the accumulation of permanent disability.

As early as 2010, MS researchers began to suggest that rather than simply slowing down the disease, a clinical goal of therapy could be “freedom from disease activity.” The idea is that measuring the number of people with MS who can achieve freedom from disease activity could become a better gauge to determine therapeutic effectiveness. The concept is now referred to as “no evidence of disease activity,” or NEDA, for short.

What is NEDA?

While the definition of NEDA is evolving, “no evidence of disease activity” means exactly what is sounds like. A person with MS would show no signs of active disease — but this doesn’t mean that old symptoms or disability would disappear. For NEDA to occur, three conditions need to be met, the combination of which is sometimes called NEDA3.

• No clinical relapses or exacerbations
• No Gd-enhancing (active) lesions and/or no new or newly-enlarging T2 lesions
• No change in the neurological exam or confirmed disability progression

Note that these measures are focused primarily on inflammatory disease activity and do not readily capture other disease consequences, such as neurodegeneration. Researchers have suggested the addition of a fourth measure — brain volume loss— to provide a more comprehensive view of disease activity and progression. This new criteria is called NEDA4.

Read this post in it entirety:
'No Evidence of Disease Activity' in MS: What is NEDA, Anyway?

Pseudoatrophy and Multiple Sclerosis

Multiple sclerosis is a demyelinating disease of the central nervous system that is often marked by changes in the brain. Using magnetic resonance imaging (MRI), these changes can appear as lesions, “black holes," or brain atrophy.

What are lesions?

In MS, the fatty, protective covering that surrounds nerves, called myelin, becomes damaged due to inflammation in the central nervous system. The result of this inflammatory damage is demyelination. Lesions are the hardened areas (scars) or plaques where myelin has been damaged. Multiple sclerosis literally means "many scars."

Where inflammation damages the blood-brain barrier, lesions can develop. This inflammation and active lesions appear on MRI scans as white spots when gadolinium, a contrast agent, is injected into a vein beforehand. Lesions can also affect the spinal cord or optic nerves.

What are black holes?

When so much of the protective myelin has been damaged that nerves die, the resulting lesions appear as dark spots on MRI scan. These dark spots are often referred to as “black holes.” Although the body can work hard to repair myelin, once the nerves have died they do not grow back. The damage is permanent.

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Brain Atrophy, Pseudoatrophy, and Multiple Sclerosis

MS Lesions With Central Veins Lead to Faster Diagnosis

Researchers in Nottingham, UK, have been trying to find a quicker and more accurate way of identifying MS in patients with an unclear diagnosis. To do this they have focused on T2-weighted MRI scans that can show both hyperintense MS lesions and their central veins, which appear hypointense in contrast. Lesions with central veins are called perivenous lesions. In reading your MRI report, you might see reference to periventricular lesions. These are lesions located near cerebral ventricles (a series of interconnected, fluid-filled spaces in the core of the forebrain and brainstem) that are common in MS.

What the researchers have found is that the percentage of lesions that are perivenous can predict whether a patient has MS. Using an ultra-high-field 7T MRI machine for a 2013 study, Mistry et al found that patients for whom more than 40 percent of their lesions had central veins developed MS. Those who had fewer than 40 percent of perivenous lesions did not have MS. This was true for 100 percent of the 29 patients included in the study.

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New Way to Evaluate MRI Scans May Lead to Faster MS Diagnosis

Stable MRI: Unremarkable and Grossly Normal

Unchanged, grossly normal, unremarkable —– These are some of my favorite words that were included in my most recent MRI report. Very good news. It confirms that my MS has remained stable for another year.

I have been very fortunate. In fact I haven’t had a BIG, steroids-required, symptoms-out-of-control relapse in four years. When I think back to the last one I realize what a difference four years and a minor change in treatment philosophy makes.

Back in 2011, I had a lot of health issues going on and I was suffering from ‘doctor fatigue’ – that feeling you’ve had too many doctor’s appointments and you’re tired of making ‘medical care’ your full-time job and not enough time to take care of yourself.

When I blogged about ‘doctor fatigue’ in 2011, these were some of the things I talked about: 1) failing to schedule an appointment with my rheumatologist in the summer, 2) skipping routine blood monitoring, and 3) not calling the office when I experienced flares. When I finally did schedule an appointment, it was to schedule Rituxan infusions.

At the time, we were waiting to schedule infusions until AFTER I began to experience the return of symptoms (of MS or RA) and I was trying to tough it out. That November, I experienced an MS relapse that affected my walking ability with increased weakness and numbness in my limbs and severe fatigue. A round of solumedrol reduced both my MS and RA symptoms. It was at this point my doctors and I decided that I should try to schedule Rituxan infusions BEFORE symptoms began to return or relapses or flares occurred.

Fast forward to this fall at the end of a very busy string of medical visits and I get good news that reinforces our decision to continue Rituxan infusions every 6 months was the right choice. Rituxan (rituximab) is a B-cell depleting therapy that is used for a variety of conditions including lymphoma and rheumatoid arthritis. Recent trials with a drug that works in the same way, ocrelizumab, showed effectiveness against MS.

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Happy To Be Unremarkable

Gadolinium Can Cause Troublesome Side-Effects

Reported by ProPublica, patients who have undergone MRI with contrast have been experiencing concerning side-effects, such as cognitive effects. It is known that patients with impaired kidney function who are unable to excrete gadolinium should avoid contrast agents. However, three recent studies reveal that even patients with healthy kidneys are retaining traces of gadolinium, a potentially toxic metal, in different parts of the body.

Of the nine gadolinium-based contrast agents sold in the US, Omniscan and Magnevist are the ones causing problems. Radiologists are encouraged to change their prescribing habits, rather than stop using contrast agents because of their proven benefits to patients.

In a statement, an FDA spokesperson said the agency is “carefully reviewing” the new studies to “better understand the potential consequences to determine what further action is needed, which may include taking steps to ensure the public is aware of these preliminary findings.”

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Problems with Gadolinium MRI Contrast Agent

What is "The Cure"?

If you had asked me what The Cure was in college, I’d say an English rock band that was fun to listen to because their music was SO DIFFERENT from the classical music of Bach, Beethoven, Brahms, Chopin, Czerny, Debussy, Mozart, Prokofiev, Strauss, Tchaikovsky, Kabalevsky, and more, I studied and performed every day while in music school.

If you had asked me what The Cure was just a few years ago, in reference to multiple sclerosis, I’d say a treatment that got rid of MS for good, transforming an incurable disease into a curable one through some amazing mode of action that worked for everybody stricken with this bizarre and relentless disease that frequently wreaks neurological havoc. Basically, I pictured no new attacks or damage, ever.

If you ask me what The Cure is today, I would first ask what YOU mean by cure — because we each have different ideas and opinions on these types of issues.

When I picture what the cure for MS might look like, I think of something that not just stops disease progression, but which reverses the damage that MS causes to the central nervous system. Complete eradication of the disease may be a successful cure. But look at diseases such as measles which was supposed eradicated from the US in 2000, it has come back due to lapses in vaccination practices. However, MS is quite different than the measles so that’s not a fair comparison.

Does remyelination equate “cure” in your book?
In thinking of my own experience with MS, my current disease-modifying treatment seems to have practically halted disease progression in recent years. Certainly I still experience many MS symptoms, especially the kind that get worse when I’m not feeling well, overheated, fatigued, or sick. I have damage that will likely never improve.

However, this overall improvement of my MS didn’t happen immediately; in fact, I used pulse steroids during the first year after switching medications because things just wouldn’t calm down. I even had some relapses about the same time I was due for a round of infusions but had been putting it off.

But once I got on a regular pre-emptive schedule with the infusions, things began to get better. I regained strength and function and haven’t had a major relapse in four years. My MRI scans are stable, even improved from two years ago. No new lesions in the brain or spine, and my cervical lesions have become smaller.

It’s not a cure, but definitely a huge success in my estimation. To be “cured” of MS, I would like to not experience any significant residual damage from previous attacks. I would like to experience complete remyelination. What my body has done on its own is great, but I’d like to see more.

So that’s what I would like to see as the cure of MS — no disease activity, no symptoms, no neurological damage, no signs of MS whatsoever.


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What is the MS Cure?

Multiple Sclerosis Without Evidence of Demyelination?

People who are in the process of being tested for multiple sclerosis often have many questions. Some of the most common questions surround the subjects of MRIs and lesions. Magnetic Resonance Imaging (MRI) is a powerful tool used to help diagnosis MS as well as measure disease progression. Lesions are the scars caused by demyelination which can be detected by MRI scan.

There have been many occasions where people in the process of being diagnosed with MS ask whether it is possible to have MS and not have brain lesions. The short answer is an unequivocal YES.

When I first experienced blinding optic neuritis in 2000, the neurologist ordered MRI scans of my brain. The results showed inflammation of the optic nerve, but no detectable lesions in the brain. Thus I was not diagnosed with MS at that time.

Five years later, when I was undergoing MRI testing of both my brain and cervical spine, lesions were seen in my neck. But my brain was still clear from lesions or atrophy. We only had to wait a few months until additional lesions showed up in my cervical spine and an official diagnosis was made.

Eventually the smaller lesions in my spine grew together to form one large lesion that spanned from the C4 to C6 vertebras. At the time I switched from my original disease-modifying therapy (Copaxone) to a totally different treatment approach (off-label Rituxan), I was hoping to avoid developing even larger lesions in my spine as I was definitely experiencing increased symptoms and relapses.

After I had been on Rituxan for a year, my MRI report indicated stability in lesion load, meaning that I had not developed any new or larger lesions. Follow-up scans two years later were stable, without evidence of new or worsening lesions, once again.

Another two years have past and I’ve just recently undergone MRI exam to determine two things: 1) How is my MS is doing? and 2) Is my current treatment continuing to be effective? What follows are the radiologist’s reports following the recent MRIs.

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Living with MS: No Evidence of Demyelination

Got Nothin' Up Top...Still

Yesterday, I had a neuro appointment.  This was a follow-up from an appointment I had two weeks ago, during which time we discussed some symptoms I had been experiencing this summer.

I also told her about the week or so of new bowel issues in the spring and the two weeks in June when my left forearm felt like it was on fire and the slightest touch made me jump and recoil.  Previously this arm had simply been very numb (still is).  I wondered if I weren't feeling the effects of nerve repair, or more likely two nerves just sending cross signals.

She put me through all the normal neurological silly human tricks.  My balance was obviously more off than it had been previously.  I was more numb than before.  My hip muscles were weaker than usual.  And.....my face was becoming annoyingly numb.

I reported how I had felt really good MS-wise when I got a bonus dose of steroids with the Rituxan infusions.  Feeling that I had too many little things going on, she scheduled me for one day of solumedrol the same day as my appointment.  Basically just to see if I got a boost or any relief from the boost.  We also talked about doing some pulse steroids.

But first, I had to get a baseline bone density scan.  The following week was a new MRI scan.  I was curious and nervous to see if lesions had started growing amok since I stopped Copaxone last fall.  I also wanted to see if there had been any improvement since I started Rituxan. 

The results.  My bones are rather dense.  My scores are 1 and 1.5 standard deviations from the norm of a 30-year old healthy woman.  That's really good.  So I'm going to do another 1-day of steroids at the beginning of September.  We'll see if it makes a difference in how things are going.

The radiologist's report couldn't have been more boring or less exciting.  In fact, I think he must have been bored while studying my brain.  Absolutely nothing to see there.  I'm all clear up top.  I still do not have any brain lesions.  Whoohoo!

The one nasty cervical spine lesion which seems to cause me all the grief is still there, but didn't seem to have grown any.  In fact a smaller neighboring lesion which was seen in my neck back in 2008 was apparently no longer there.  Improvement!!

Like I said previously, I'm feeling pretty good.  My symptoms have flared up randomly during the past six months, often lasting for a week or more.  But the severity hasn't been anything to get excited about, meaning nothing to warrant a call to the office to get steroids.  If we call those mini relapses, and if this is representative of what my relapses will be like (having not much bite), I'm almost venturing to say that the Rituxan experiment is working for me.

During yesterday's appointment, I had improved in several of the neuro tests.  I actually completed the heel-toe walk without landing on the table.  I wobbled for sure but managed to save it and hold on.  Two weeks ago, legs lost position and I did practically land on the table.  Two weeks ago, my face was really acting up and I was very much fatigued.  Basically, I was in a mini relapse which has resolved now.  Whether it was the steroids or simply time that "fixed it" - who cares.

My hip muscles are still very weak (which would account for the difficulty I have walking sometimes).  My arms are still very numb, like completely boring with the pin-prick test, like please make me go ouch or I'm going to yawn here.  LOL.  My legs are only numb up to the knees now.  More improvement.

Basically all good news.  Now I need to give myself permission to feel good about it all.  Sure, I'll do the pulse steroids (if I want) over the next five months.  It's really up to me and how I feel.  Right now I think that I'll decide to feel good.  How's that?

An Uncommon MRI

Wonder if Lazy Julie suffered this side-effect during her recent MRI trip? Julie found a website for all of us which has examples of the sounds of the MRI. Ah, brings back memories.

Cartoon from Closer to Home by John McPherson

(h/t to Doc at Mind, Body, Soul)

How Is MS Diagnosed?

You know that something is not right and your doctor has referred you to a specialist. Your next step is to Consult with a Neurologist.

The Neurologist
A neurologist is a medical doctor or osteopath who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles.

The Initial Appointment
Prepare in advance for your first visit to the neurologist. Compile a summary (or chronology) of your illness (and other diagnoses) which should include:
§ When did symptoms begin? What symptoms did you have at the beginning?
§ What brought on the symptoms or made them worse?
§ What other symptoms have occurred? When did they occur?
§ What tests have been done? What were the results?
§ What medications have you taken? What were the results of the treatment?
§ List all current medications and the dose you are currently taking.

Symptoms to Consider
§ Changes in Vision
§ Vertigo
§ Weakness and/or numbness in arms/hands/legs/feet
§ Coordination problems in arms or legs
§ Balance problem
§ Trouble walking or falling
§ Speech problems
§ Memory loss/cognitive problems
§ Confusion/hallucinations
§ Decreased attention/concentration
§ Poor judgement/reasoning
§ Depression/anxiety
§ Fatigue (constant or intermittent)
§ Bladder or Bowel problems
§ Sexual dysfunction

The questions and list of possible symptoms listed above come directly from my own neurologist's New MS Patient Form (pdf) at the Neurology Center of Fairfax.  For more information regarding diagnostic criteria, please visit the National MS Society's page on Diagnosing MS or review Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria published in Annals of Neurology (2011;69:292-302).

Read this post in its entirety:

Beginner's Guide to MS: Do I Have MS? What Does It Take To Get Diagnosed With MS?


Late updated: Feb 4, 2012

Sometimes "Going with the Flow" is not Easy

I met with my MS-NP (nurse practitioner) yesterday.

For those who are new to Brass and Ivory, I finally acknowledged in early March that I was experiencing an honest-to-goodness MS relapse. I didn't even get to leave the Neurology Center from that appointment in March without signing-up for five days of IVSM (Solumedrol) in the Infusion Center.

On Day 5 of the IVSM, I was ecstatic to be able to stand-up out of a chair or the couch without struggling or pulling on the coffee table. Yeah!!! My legs had decided to work again. Standing up is such a glorious accomplishment at times.

Meanwhile, my body started feeling loose and free...much less spasticity...how very nice that was. Improvement continued during the 10-day steriod taper and beyond. I even regained most of my sense of balance.

About two weeks ago, only 1 month since the IVSM, I started to find climbing the stairs becoming difficult again. Then a rubber band settled around my right knee, followed by the hamstrings and calves which stayed tight and rigid, impervious to stretching or massage. Soon I found standing up to be strained again.

If any of you have sensed a bit of dissatisfaction around here lately, now you know more of the story. To be honest, I haven't been entirely pleasant to be around in real life either.

Last Monday, I expertly surfed the Magnetic Tube without a single wipe-out. Beforehand I predicted that lights might glow, but this time no enhancement occurred with the gadolinium. Perhaps that could be explained with my having waited five weeks after the IVSM treatment to get the MRI.

However my inner voice is rarely wrong and it insisted that something was amiss in that brain/neck of mine. And wouldn't ya know, that voice was correct.

Just check out this image.

What do you see? Really?!!

That's what I said too.

Guess what? We're right....

That's a non-enhancing, demyelinated lesion which spans from C4 to C6 and measuring about three centimeters. Previous lesions spotted in this area a few years ago were measured in millimeters.

The MS Nurse mentioned that, although there are a few spots in the brain, no change is apparent since the last MRIs taken in 2006. And that the brain lesions are so small that someone might only detect them if he were looking very closely and specifically for MS-related lesions.

Then we discussed my continuing relapse symptoms, the difficulties resulting from said relapse, and the frustration I'm having with the spasticity in my legs. We discussed another round of steroids, although only 3 days this time and without an oral taper.

She wanted me to start immediately, but I'm going on a trip with my Sweetie this Thursday and returning next Monday. We're headed to Florida to attend a wedding and enjoy a mini-vacation. No...I don't think steroids this week is a great idea. So I'll do it next week.

[Sidenote to my Sweetie who often reads the babbling I write here: Remember our discussion about engagements? I really would like to have the opportunity to enjoy an engagement much longer than Sean's. Hint-hint. The MS Nurse asked AGAIN if I had any good news to share. Just sharing.....]

So the nurse and I also discussed trying Baclofen to help with the nerve/muscle communication in the legs, as well as increasing the Neurontin in an attempt to shut down the inner mosh party from the waist down. Just last year, we decreased the Neurontin to help lessen fatigue. Aargh!!! But at least I did leave with five boxes (35 pills) of Provigil samples, worth almost $350.

So if I've seemed a little off...that's cause I have been...literally a little off to the right. I'm sorry. But as the EOB (Explanation of Benefit) forms start coming in for all these doctors visits, infusions, mri, more infusions, followed by more doctors visits, I'll have to give a summary of the cost of this relapse. At least nobody ever said that MS was an inexpensive disease.

Oh...and to top it all off...this happens to be a busy time of the year and I'm beginning to feel a wee bit stressed. No, make that simply more exhausted in all possible ways.

Surfing the Magnetic Tube

Which of these tubes do you like?

Monday morning I will be "surfing the magnetic tube" to get some pretty gray-scale pictures of my goofy brain. It has been 15 months since my last trip through the noisy ping-zap-thumpthumpthump-beeepbeeep-ping-zap-thumpthumpthump machine. The reason for locking my head in the oh-so flattering face cage is to take a little looksee for glowing runway lights or christmas tree bulbs.

My inner Yoda - "find changes, the magnets will. Ah, yessss."

Recovery from this recent relapse has been disappointing so far. I was so excited to be able to stand from a seated position without pulling on the coffee table or pushing off into a tucked skiers' position before straightening into an upright position. However during the past 10 days or so, the standing struggle has crept back into my legs and I'm starting to lean to the right again.

Yesterday at the solo festival event, I had to walk from one end of the school to the other several times over. It was rather exhausting and I crashed as soon as I got home. Later in the evening as I went upstairs to get something, it was as though I was climbing the Great Wall of China. Seriously, I had to lay down for quite awhile until I felt strong enough to go back downstairs to enjoy watching some TV during the rest of the evening.

I hate feeling weak!!!

I inherited these sturdy English/German thighs which should belong to someone who is athletically talented (which I'm not.) But I've always been able to depend upon these thighs, and the rest of the leg team, to be strong. Heck, in college the band marched in parades which were 3-4 miles in length and that didn't kill me. Thinking back, after such a parade I would experience tingling, numbness, and a feeling of coldness in my legs which I just figured was the sensation of muscles regaining cirulation. I didn't give much thought to it.

"Hmmm. Early MS symptoms, maybe these were."

Anyway, I'll share with you what the magnets show, especially if my brain or neck lights up and the neurologist wants to have a disease progression talk. We'll see what happens.