Strange symptoms make me wonder if I’m having neurological complications

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

A sharp twitch jolted my right eye, like lightning striking. I closed my eyes, pressing my hand over the aching spot. Soon, a throbbing migraine wrapped itself around that side of my head. Then, the full-body twitches began.

In September 2020, I nearly died from multiorgan failure and the destruction of most of my red blood cells, platelets, and plasma. The culprit was an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS). It ravaged my blood and riddled my organs with tiny clots, damaging significant portions of organ tissue.

Early on, we were aware of the severe damage to my kidneys, liver, and heart (and later, my uterus, which led to a hysterectomy), and I understood the consequences, which included severe hypertension, fatigue, postural orthostatic tachycardia syndrome, chronic kidney disease, and severe edema.

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During this ordeal, I also suffered a stroke, and the left side of my face still bears subtle differences because of it. Even as I’ve healed, though, odd neurological symptoms persist: mainly eye twitching, full-body twitching, and tremors. The body twitching is difficult to explain — it isn’t a seizure and lasts only a split second, resembling a sudden cold shiver. But unlike a shiver, this aggressive jolt is both painful and uncontrollable.

The tremors are also painful. After a prolonged episode, my muscles cramp, mostly in my feet, calves, and hands. My medical team doesn’t believe these symptoms are tied to my stroke because they aren’t exclusive to one side of my body, and they developed months into my illness.

All these symptoms worsen when I’m overtired, so getting plenty of rest is crucial. The eye twitching occurs anytime I don’t get enough sleep — and sometimes even when I do. The strange full-body twitches and migraines happen several times a week. These symptoms are also at their worst the first few days after I receive my regularly scheduled infusion of Soliris (eculizumab), a monoclonal antibody that’s approved for aHUS patients.

No one on my medical team mentioned neurological effects as a possible comorbidity of aHUS, except for issues caused by the stroke. I don’t see any of these symptoms listed in the information about the potential adverse effects of Soliris, either.

I think this is a reminder of why it’s so important for us patients to communicate any new issues or symptoms to our medical teams, which I’m doing. I’m also communicating with my drug coordinator at Alexion Pharmaceuticals, the manufacturer of Soliris.

In true “living with rare and chronic illness” fashion, I’m grappling with the unknown while working with my care team to try to solve this mystery.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.