Invasion of the Body Snatcher

One day in 1993 or 1994, Betsy and I were about to drive to her mom and dad’s for dinner. I walked out to the van and fell. I didn’t trip, stumble, or lose my balance; I just…fell. What the heck?

I didn’t think anything of it at the time, didn’t even mention it to Betsy, who was still in the house. I just got up and got in the van, ready to go.

Around the same time, I had gotten an ocular migraine—a shimmery spot in my right eye, which went away after an injection at the ER, and I had experienced some numbness on my torso, which my doctor had attributed to an allergy to fabric softener.

Not long after, I was supposed to take Betsy to the airport for a business trip. Except when we got into the van, I found I couldn’t lift my right foot to press the brake pedal. I had just walked to the van with no problem, but when I got there and sat down, my right leg and foot just refused to cooperate. Betsy was understandably annoyed, but she called her mom at work to come and take her to the airport. What the heck? I felt fine and didn’t have any pain. The doctor said it was probably a bout of fibromyalgia.

I didn’t think much of any of this—I was 32 and felt fine. No worries.

Fast forward to 2003. For several days, I had had a slight headache that was centered around my right eye—not a major headache, just noticeable. On Sunday, it was a little more noticeable, so on Monday, I made an appointment with the doctor for later in the week. But on Tuesday, I woke up with a blind spot in my eye—in the same spot as the migraine I had way back in 1993.

My doctor immediately sent me to a top ophthalmologist in the area, who handed me off to a neurology ophthalmologist. After a brief examination, he said, “It could be one of two things: a small stroke in an optic nerve, or Multiple Sclerosis.” He prescribed eyedrops to treat the possible stroke and a course of IV steroid infusions to treat the possible MS, then he made an appointment for me to see a neurologist who specialized in diseases of the Central Nervous System (CNS).

This is Spinal Tap

The CNS neurologist scheduled me for a lumbar puncture (spinal tap).

A word about lumbar punctures: They’re not as bad as what they typically show on TV. Most TV programs show the “old”  way--a patient lies on their side with their knees pulled up to their chest while a doctor eyeballs their spine and pokes them with a needle to drain some spinal fluid. My experience was the “new” way: You lie face‑down on a table with your arms above your head while the doctor uses a fluoroscope to find the right spot. They numb the area, slide a hollow needle between the vertebrae, tip the table to let a small amount of spinal fluid drain into a test tube, and then bandage the site. Easy peasy.

The "old" way.

The "new" way.

Easy peasy except that, even though the doctor only takes a small amount of spinal fluid, it takes a while for the body to replenish that fluid. Which results in a monster headache. I mean a MONSTER. The kind of headache that makes you dread sneezing, coughing, burping, and continuing to live. Seriously, it’s a bad headache. For about a week.

According to the NIH, “The exact pathophysiology of headache after lumbar puncture is…most probably related to the 'hole' left dura after the needle has been withdrawn, resulting in persistent leak of CSF from the subarachnoid space. This leakage results in a fall in intracranial CSF volume and CSF pressure.” Yeah, pain. Take a week, take a lot of naps, relax. It passes.

After a couple of days, the diagnosis was in: there were myelin floaties in my spinal fluid, so I had Multiple Sclerosis. An MRI of my brain showed some “lesions” or “plaques”, confirming the diagnosis. On April 3, 2003, my life changed forever, but, as I told the neurologist, “It could be worse.”

What is Multiple Sclerosis?

Think of your nerves as wires, and myelin as the plastic coating that keeps them from shorting out. With MS, your immune system mistakes that coating for something harmful and attacks it. As more myelin gets damaged, the “wires” short out, and signals from your brain or spine get interrupted. Over time, the loss of myelin can permanently damage the nerves themselves, leading to disability.

MS affects everyone differently, and although it can show up anywhere in your brain and in your spine, for me, it only affected the left lobe of my brain at first, which means all of my symptoms affect the right side of my body. That changed a little around 2018, but we’ll get to that in a minute. In short, anywhere you have muscles, you have nerves, so anywhere you have nerves is subject to an MS flare-up (also called an “exacerbation”). Personally, my exacerbations have included:

• The numbness, migraine, and weakness I had in the ‘90s that “hinted” at MS and disappeared before any diagnosis could be made or even considered

• The partial blindness that led to my initial diagnosis in 2003

• For a few weeks, my right hand would erupt in maddening itching. The only thing that quieted it was running the hottest water I could stand over it. Thankfully, it wasn’t constant, and it hasn’t come back. It could have been worse: itching is pain, and this pain was just really bad (but not Shingles bad) itching.

• Weakness and foot‑drop on my right side meant wearing a brace for a while, and eventually I had to switch to a left‑foot accelerator because I couldn’t move my right foot reliably between the gas and brake.

MS Takes without Giving

Around 2016, I had a major flare‑up that hit my temporal lobe and my lumbar spine, drastically limiting how far I could walk. It also scrambled my internal thermostat—if I get too hot, my right eye crosses, and I can barely manage 100 feet even with a cane. The good news is that about 15 minutes in air‑conditioning resets me to “normal,” meaning I can walk a reasonable distance with my cane or a rollator. I do much better in cooler weather.

I miss walking. I used to walk everywhere, and in the first few years after my diagnosis, I walked all over Munich, London, the District of Columbia, Key West, and the Disney and Universal theme parks in Florida (multiple times). My last real walking trip was San Francisco—with a cane. I walked so much that the bulk of my nighttime dreams are of me walking.

So, the biggest direct impact MS has had on me to date is that travelling has become a major pain in the ass. I can do it, and still do, but the logistics have changed drastically. No more just jumping up and going somewhere—there are walkers and wheelchairs and step-in showers and rental cars with left-foot accelerators to consider. Are there elevators? If there are stairs, how many? Is the destination handicap-accessible?

Beyond that, my greatest fear is that MS will affect my cognition. Right now, I can still work because my job as a Knowledge Base Architect is 98% mental and maybe 2% physical. But that can all change with a single flare-up in the right (wrong) place. I’ve already seen some changes in my memory. Very often, if I’m describing a movie, or a song, or an actor or whatever, the second I try to say the words, the name that I just had in mind just disappears. Sometimes it comes back after a minute or so, and sometimes I have to go Google something related to arrive at the answer. I honestly don’t know if that’s the MS hiding stuff from me or just getting older. Either way, it’s frustrating for sure and a little scary.

Is There a Cure for MS?

No. Before 1993, there was basically one way to treat the symptoms of MS—steroids. Steroids helped by kicking the body into overdrive to reduce your symptoms, but they were (and still are) just a temporary band-aid. But since 1993, researchers have discovered several disease-modifying therapies (DMTs). The first few were injections you gave yourself.

When I was out of injectables (and had another flare-up), my neurologist tried me on a once-a-month IV infusion called Tysabri®. I had two doses of that with no problems, but 15 minutes into the third infusion, I had an allergic reaction and ended up in the ER for a few hours while they pumped me with Benadryl®. Come to find out, one of the components of Tysabri is hamster serum (Google it—it’s used a lot). So I’m allergic to hamster serum, which means I’m also allergic to the RSV vaccine. Who knew?

Anyway, Tysabri was a no-go, but science was ready with a new and awesome DMTs—pills! Gilenya, and after a flare-up, Aubagio®.

Aubagio was pretty good at keeping me from having any flare-ups, but when an MRI showed my lungs covered in spots—covered!—things got weird. My neurologist called in a panic and suggested I see an oncologist because the MRI indicated what might be lung cancer. I felt fine, I’m not a smoker, and I wasn’t coughing a lot, but the amount of spots in my lungs indicated I should be having a lot of cancery symptoms. I stopped taking the Aubagio, and I went to an oncologist who (based only on the MRI results) told me I had stage 4 lung cancer. Bull shit! I went to Moffitt Cancer Center in Tampa, where an oncologist arranged a lung biopsy. After three attempts, plus a couple of MRIs and ultrasounds, they found no cancer. The spots were from an infection—Aubagio had weakened my immune system. Once I stopped taking it, my body cleared the infection and the spots disappeared. Cancer scare over.

All of the MS DMTs have side effects—a possible (but very rare) fatal brain infection is one of them—but probably the most common one is liver damage. Unfortunately, all of the DMTs have the nasty habit of raising the levels of various liver enzymes over long periods of use. Besides flare-ups signaling that is may be time to switch meds, semi-annual blood work is necessary to make sure your live enzymes stay within acceptable levels.

Is Multiple Sclerosis Fatal?

No. Yes. Maybe. We’ll see. Actually, no.

Multiple Sclerosis itself isn’t fatal. When you hear that celebrities like Terri Garr, David L. Lander, Annette Funicello, or Richard Pryor “died of MS,” that’s really just sloppy reporting. What can be fatal are complications tied to MS—things like swallowing problems, serious infections, heart or lung issues, or severe depression that can lead to suicide. The disease isn’t the direct cause.

Studies show that people with MS live, on average, about seven years less than those without MS or another autoimmune condition. We're all gonna die, but Christina Applegate, Selma Blair, Art Alexakis, Jamie-Lynn Sigler, and I won't die of MS.

The Long and Short of It

Twenty-three years after my diagnosis, 33 years after the first signs, and 42 years after I had the mononucleosis that may have started the ball rolling, I still believe it could be worse. It’s a pain in the ass not being able to do everything I want to do as I want to do it, and I’ve had to adapt a lot. I hate having to ask for help, hate feeling like I’m a burden to anyone. In my low moments, I whine to myself, “Why does everything have to be so freaking difficult?”, but in the big picture, things are pretty good. I have a wife, friends, a home, and a job I love. I’m pretty fortunate and ready to see 100 in 38 Years. Mahalo.

© Brian G Parker