Ain't nothin' pseudo about a pseudo-exacerbation

Medical professionals like to toss about impressive vocabulary words, discussing diseases almost as if they were teaching graduate students to identify physiological conditions. It’s no different with multiple sclerosis.

“Pseudo-exacerbation” is a prime example of this. This term, commonly used by MS specialists, is actually a misnomer. Neurologists may disagree with that statement. But, as a veteran MSer, I have to argue this way. (Ask any MS warrior.)

Let’s take a moment and consider what this means.

The word “pseudo-exacerbation” actually means “false exacerbation.”

Sorry, Doc. That ain’t so.

What is an exacerbation?

Call it a flare-up or a relapse, if you prefer. By any description, it’s a hellish season the MS warrior endures. Old symptoms reappear. New symptoms crop up. And, with or without steroid treatments (which create their own nightmares), no one ever seems to know how long this ordeal will last (or if it will end at all).

What about pseudo-exacerbations?

These shorter-lasting flare-ups tend to be caused by triggers to which those with MS are particularly sensitive. Extreme fatigue, fever, hot weather, illness, infection, stress, and even certain foods may bring up MS symptoms for a while.

Under such conditions, the MSer may experience dizziness, fatigue, numbness, tremors, vertigo, vision problems, or a host of other neurological troubles. Once those triggers cease or are eliminated, the symptoms tend to back off for a bit.

Hey, experts often can’t even determine for sure whether an MSer is experiencing a pseudo-exacerbation or an all-out MS flare-up. At least, they cannot tell until the affliction abates. Then, if it seemed particularly brief, they tag it as a pseudo-exacerbation.

But it’s never pseudo at all. It is most definitely real and authentic and genuine to the MSer who actually endures it.

Maybe it’s time for a new term for these briefer episodes of MS agony.

How about calling them short-term relapses, momentary flare-ups, stimuli-related symptomatic explosions, or situational exacerbations? But let’s not negate the MSer’s  suffering by calling it “pseudo.”

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 Adapted from public domain artwork and photo

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A-Z promising quotes: Pain

Oh, please. MSers know a little something about pain. Living with multiple sclerosis, we experience achy pain, emotional pain, fatigue pain, injury pain, mental pain, migraine pain, muscle pain, nerve pain, sharp pain, spasticity pain, tingly pain, and whatever sorts of pain anyone might imagine.

That doesn’t include the pain from injections and various neurological diagnostic procedures (such as evoked potentials testing, up-close neuro-eye examinations and the ever-dreaded lumbar puncture).

We get it, when it comes to pain – like anyone battling a chronic medical condition.

Maybe that’s why these lines from British Romantic poet Percy Bysshe Shelley (1792-1822) rings so true.

We look before and after

And pine for what is not.

Our sincerest laughter

With some pain is fraught.

Our sweetest songs are those

That tell of saddest thought.

Shelley was well acquainted with pain. He lost at least two loved ones to suicide and wrestled personally with depression. In fact, some sources seem to indicate his drowning death at sea may not have been an accident. Shelley understood darkness and sorrow and suffering.

Here’s an odd truth about pain.

Those who grow most familiar to it often seem to find ways to learn from the trouble. Long-term suffering, such as that which comes from chronic pain, tends to make us either bitter or better. We can ripen or rot. We may grow wiser or simply wizened.

Not sure where the threshold is, but I seriously want to grow bolder through brokenness, deeper in deficiencies, and powerful through pain. I wanna pray stronger, carry firmer faith, and stand steadier – especially in the stretches when MS makes me unsteady and uncomfortable.

Hey, is pain is somewhat inevitable with a condition like MS, why waste it?

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Created by this user

with public domain artwork

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I bucked the system and skipped the spinal tap

A multiple sclerosis diagnosis can be a sticky widget, so to speak. This identification is rarely simple, and it tends to take multiple forms of evidence to determine.

Generally, neurologists will rely on magnetic resonance imaging (MRI), along with the possible additions of Sensory Evoked Potentials (SEP) testing, visual exams, anecdotal and symptomatic information, an in-office neurological examination, and perhaps a spinal tap (also known as a lumbar puncture).

What is a spinal tap / lumbar puncture?

This test involves the collection of cerebrospinal fluid from the patient’s spine, using a large hollow needle, which is inserted directly into the lower back. A lumbar puncture may be performed to diagnose any number of neurologically related conditions, including multiple sclerosis.

The test carries multiple risks, such as:

• Back pain
• Bleeding (external or epidural)
• Brainstem herniation
• Dizziness
• Headache
• Infection
• Nausea and vomiting
• and more.

Plus, a lumbar puncture can be downright uncomfortable, to say the least.

I basically cross-examined my neurologist about the lumbar puncture, when she brought up the idea. At the time, I’d already undergone multiple MRIs, the SEP, a host of neuro-ophthalmology tests, and several extensive medical histories.

Our discussion went something like this.

“So the lumbar puncture is both uncomfortable and potentially risky, right?”

“Yes, that is so.”

“And I could experience a horrific headache and possibly some dangerous side effects?”

“Yes. But we could follow up with a blood patch, if you have the post-procedural migraine.”

“Will the spinal tap change the treatment plan you propose?”

“Not really.”

“Will it lead to a more definite diagnosis?”

“Maybe not.”

“Would the lumbar puncture offer conclusive evidence of MS?”

“Probably not.”

“Please tell me again why I need to go through the procedure.”

Maybe I just developed a strong backbone.

I opted out. And I still received the same diagnosis.

That may not be true for everyone dealing with possible MS.

Certainly, not all MS diagnoses can occur without this test.  And I would find no fault with anyone else’s medical testing decisions. The choice is between patient and doctor.

But I learned an important lesson in this process.

The patient is his or her own best advocate, when it comes to medical care. And, in my own case, I chose to take a pass on the spinal tap.

Hey, I already have enough killer headaches without upping the ante with an invasive central nervous system procedure.

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Vintage painting by Walter Crane

 late 19th C

public domain

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Sorting out 6 types of brain scans

If you or a loved one has multiple sclerosis, or even if doctors suspect that might be the case, you are probably already exploring brain scans. The subject can be mind boggling.

Generally, six types of brain imaging are employed in today’s medical environment.

These diagnostic procedures may be performed in a hospital or special imaging center.

1. Computed Tomography (CT) / Computerized Axial Tomography (CAT) – Known as a “CAT scan,” This test uses x-ray technology to generate an image of the central nervous system. Usually, dye is injected into the patient’s bloodstream to highlight possible inflammation, tumors, or other inconsistencies.
2. Diffusion Tensor Imaging (DTI) – The DTI measures the diffusion of water molecules in various sections of the brain. Abnormal imaging results may point to disease of injury.
3. Magnetic Resonance Imaging (MRI) – The MRI uses radio waves and powerful magnets to produce intricate images of the brain. Frequently, M. specialists request MRIs of the neck and spine as well.
4. Functional Magnetic Resonance Spectroscopy (fMRS) – Like an MRI, an MRI Spect creates a detailed image of the brain. This advanced technology is useful for analyzing actual brain chemistry, as well as structure. An fMRS test may be ordered to evaluate possible brain cancer, injection, traumatic brain injury, or other potentially serious conditions.
5. Positron Emission Tomography (PET) – This scan measures chemical and metabolic activity in the brain, in response to injected radioactive material in the patient’s body.  PET scans may be used to diagnose or assess risk factors for Alzheimer's, for example.
6. Single-Photon Emission Computed Tomography (SPECT) – In a SPECT scan, radioactive tracer technology aids physicians in diagnosing cancer, Parkinson’s, and certain other neurological disorders.

All of these brain imaging techniques are considered non-invasive, although a few may require introduction of contrast dye or radioactive material (usually by IV injection) into the patient’s bloodstream.

For MS, the MRI is the most commonly used form of brain imaging. Evoked potentials testing and lumbar punctures (spinal taps) are also frequently favored by MS specialists.

C'mon back to Kicking MS to the Curb to read an upcoming post on why I refused to undergo the spinal tap for an MS diagnosis. It's not for everyone.

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Medical Scan

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