Things I’ve Learned at My Neuro Appointments This Year

Like many of you, I see my neurologist more than once a year. Every four months, in fact, ever since I started taking Tecfidera and Ampyra in 2013.

Tecfidera protocol requires a blood test every six months to monitor our white blood cell count. Immunomodulatory drugs such as Tecfidera can suppress our immune systems to the point where a low white count number will be flagged on the blood test results, prompting our doctors to either conduct a medication review or explain why they are not concerned about the number and advise no action be taken. So far, my white count has been “low-normal” on Tecfidera. What’s more, my last relapse occurred in 2011, three months after having gone off Tysabri and which I consider to be a rebound flare for having ceased the drug. That, along with my claims that Tecfidera causes no vexing symptoms beyond tingling, redness and burning sensations a couple of hours after dosing, has inspired my neuro’s assessment to be pretty consistent: Change nothing, everything is going well with my disease-modifying drug. This latest visit was no exception.

Increased trouble voiding bladder. Ampyra, also known as the walking drug, gives me the strength to stay on my feet much longer than before I started it back in 2013. Though not a disease-modifying therapy, it is expensive and requires me to reapply every year for a charity organization’s patient assistance program to cover the co-pay. It’s been a miracle for my leg strength and stamina, but it does have one bothersome side effect: Difficulty voiding my bladder. In my latest appointment, I reported a worse problem than usual and she asked me if it is worth continuing the drug. It definitely is worth it, so she next suggested that I see my urologist to learn how to self-cath if I find it necessary. So far I haven’t needed to, but it is in the back of my mind.

After my appointment, I had a small epiphany that a bladder infection might be causing some further voiding problems, too. I took a ten-day course of Bactrim out of my stash of this antibiotic that I keep just for such an occasion, and sure enough, voiding became easier. Sometimes a symptom isn’t MS- or drug-related and we have to rely on memory and experience to consider other possible causes such as infections. If we are very lucky, we have doctors who are willing to let us keep prophylactic doses of some kinds of prescription meds on hand so we can treat ourselves. It saves a trip to the doctor’s office—and therefore an office co-pay–when we pretty much know how to treat ourselves.

New Lhermitte’s Sign.  A new symptom that appeared a month or so prior to the appointment is a painful electrical shock in my left foot that only occurs while sitting in a certain position for more than half an hour. My neuro stated that those electrical shocks are part of Lhermitte’s Sign, a term I am very familiar with but did not apply to the symptom I was experiencing. (Lhermitte’s originates in the cervical spine and usually manifests itself as a cascade of painless shimmering sensations or painful shocks whenever the patient bends her head to her chest.) Her remedy is to put a lumbar pillow behind me whenever I sit so that my spine is better aligned and doesn’t start the cascade of painful neuropathic shocks. But an increase in my daily physical activity seems to have made this uncomfortable symptom disappear. Activity hasn’t allowed me to sit for as long as I did previously, and this seems to have made a difference. But this past week of inactivity saw the return of those painful shocks and using lumbar support did not help. I get up and try to walk it off. I don’t know if that works, but the shock cascade never lasts very long.

Improvements and deficits. When my neuro performs those strange little exams that test my cranial nerves, I‘ve been noting a change. Although I expect some decline in my abilities as the years roll on, I’m always surprised to discover an improvement of symptoms after many years. You are probably familiar with the test when your neuro rubs her index finger and thumb together near each ear to see if the sound is of equal volume. Over the past year or two, the hearing loss in my left ear seems to have resolved. Moreover, my ability to bend my toes upward on both feet has improved greatly since a 2009 attack zapped them. I love to see such improvements, they give me hope.

Another weird little test that has shown improvement involves touching my nose with my index finger and then touching my doc’s nose, followed by touching my nose and then the doc’s finger as it moves sideways, up and down. My left hand used to weave back and forth while my right had no problem. Now my left hand performs this test without weaving or hesitation. Have I adapted—or have I actually healed? The Magic 8 Ball says: “Reply hazy, try again later.”

Bi-lateral disability progression. It’s common for MS to strike one side of the body in the early years. In my case, it was the left side (I’m right-handed). But during the past year, my neuro has tested my right leg joint reflexes and Babinski plantar reflex (stroking the sole of the foot to produce toe flexion) and has twice uttered: “Your right side isn’t happy today.” Foot drop has also developed on that side.

Worse—or better? The crazy thing about having multiple sclerosis is that although the above description makes it sound like I’ve bought a one-way ticket for a wheelchair compartment on the disability train, I’m actually doing better than I did seven years ago. I can now get through a grocery shopping trip without needing to sit or rest; I can hear better now than I did as far back as ten years ago. I’m much more independent now than I was in 2009.

So I’m worse and I’m better. Only people with a progressive neurological disease like MS could possibly know why that makes total sense.

That’s why I think we are all so lucky to have each other.

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