When Something Feels Wrong, I Round Up the Usual Suspects

Managing a chronic illness is like solving a series of crimes. Day after week after month after year, we are assaulted by small-time thugs that pilfer our stash of energy, strength, nimble-mindedness, balance, hope, faith, libido, vitality, endurance, security, independence, digestion, hand-eye coordination, vision, hearing, sleep, sensation, any notions of grandeur or self-importance, and the illusion that we can control what happens in our lives. They target and then stalk us time and again, striking when we least expect it. We can’t engage the police for help or protection. This kind of theft and harassment is not unlawful. We have no choice but to engage ourselves as private investigators.

MS, IBS, and DSD

I begin by rounding up the usual suspects. The first three are:

1. multiple sclerosis (MS)
2. Irritable bowel syndrome (IBS)
3. Degenerative spine disease (DSD)

Infection is a usual offender

And if my posse can ferret it out, I’ll stick infection in the line-up, too. Infection is a multiple offender with a rap sheet so thick it could double as a doorstop. Elusive and perplexing, infection has been known to hole up in my bladder and cause urgency, difficulty peeing, and a foul odor, yet it will test negative in a urine culture. It can also cause symptoms similar to MS, leading a less experienced investigator down the wrong path. I’ve been led astray more than once. It has made me a better detective.

Dehydration

The most recent suspect I’ve met is dehydration. It, too, can mimic symptoms of multiple sclerosis. Like infection, it can worsen my MS-related balance and dizziness, leg weakness, spastic bladder and neurogenic bladder, and fatigue. And like infection, dehydration can also cause visual and auditory hallucinations, and exacerbate chronic sleeplessness.

Rounding up the whole list of suspects

Let’s not forget medication side effects. They, too, can piggyback on symptoms caused by the other five suspects. So here’s the complete line-up:

1. MS
2. IBS
3. DSD
4. Infection
5. Dehydration
6. Medication side effects

The posse that helps me solve the mystery

Now how do I go about following clues and solving the mystery? I can’t always do it alone. Often I engage my posse and we work the case together. They consist of the following:

1. Doctors
2. Nurses
3. People with MS
4. Internet

A new case starts with a new symptom

I open a new case when a symptom starts distracting me more than usual. It will be different for all of you as you get to know your body and its quirks. For me it is often my bladder. For a long while I’ve had a spastic bladder managed well by Vesicare. But UTIs can flare up at any time and they usually produce symptoms such as urgency and irritation, pain and difficulty emptying. It used to be a simple matter of medicating with an antibiotic to return to baseline. Not lately, however. After self-medicating with two courses of Cipro, the urgency persisted. It became clear to me that infection has spent so much time in the slammer that it has learned some new tricks to pull on me. So I engaged a professional for help, a crack urology CNP name Anne who is the best bladder sleuth in the business. After doing a few tests, a physical exam, and talking a lot about symptoms and the chain of events leading me to see her, we solved the mystery together and plotted a course of action. Case closed.

Cold cases that might never be solved

Some cases don’t go quite as easily as all that. In fact, I have a short list of cold cases that might never be solved. Most of them involve a worsening of symptoms that I’m not convinced were relapses even though I medicated with steroids just the same.  I did improve, but I still think it is hard to be sure when I’m having an actual relapse.

An example

For example, I take oral prednisone for a relapse as it is very effective. Once I took my usual three-week course of prednisone when it wasn’t clear to me what was going on. I improved dramatically with the highest doses, gradually becoming worse as I weaned off the medication and went right back to feeling crappy again. I interpreted this as proof that we always have nerve inflammation going on in the background that is sapping us of our abilities, much like an app running in the background that is bogging down our computer actions. Quiet the inflammation with a steroid and we can feel almost normal. So where do I file this case? Is it a cold case—or should I close it due to lack of evidence? I have asked my neurologist and others, but they shrug their shoulders and fall silent.

I can’t always know the cause. But I can still treat the symptoms with success.

Solving MS crimes

When we have MS, crime waves can crest and break over our heads pretty regularly. So whenever they do, it’s good to have resources at the ready. Much like Neighborhood Watch and cops on patrol keeping an eye on petty thieves in our area, we in collaboration with our medical professionals can work together to control the riffraff.