Dear Dr. Roach: How does a medical condition get named? Once named, can the name be changed (for example, Lou Gehrig’s disease, ALS)? I have a condition called hemiplegic migraines. It is rare and misunderstood. I am part of an online support group, and many people with the condition feel it should be renamed because the term “migraine” makes it seem less serious. Some were saying to call it TSS for “temporary stroke syndrome,” because it presents as a stroke but is temporary. What are your thoughts?
E.D.V.
Hemiplegic migraine is a rare disorder that is much more common in women and often runs in families. As its name and you suggest, it is different from a regular migraine because it causes motor weakness
during the aura phase. This can be terrifying for both the patient and the physician, as it can be indistinguishable from a stroke.
The symptoms often start in the hand and then move up the arm and into the face. This usually lasts for hours, although time courses of minutes up to weeks have been reported. People also may experience a decreased ability to speak, dizziness, unsteadiness and even mental status changes ranging from confusion to coma during the event.
I guarantee you that anyone, patient or physician, who knows this disease does not minimize its severity. However, I don’t expect the powers-that-be who control nomenclature of diseases to be likely to change the name to TSS. Another condition, transient ischemic attack, is often called a temporary stroke because it has the same underlying cause as stroke (poor blood flow to an area of the brain). The term “hemiplegic” (meaning, “weakness on one side”) migraine is more accurately descriptive of your condition.
Amyotrophic lateral sclerosis was first described and named in 1874. It is also known as Lou Gehrig’s disease because he was such a famous person to be diagnosed with this uncommon disease, so it wasn’t exactly renamed. An example of a renamed disease is Reiter’s syndrome (a type of arthritis sometimes associated with eye and urethra inflammation following an infection), named after Hans Reiter, who was a physician leader of the Nazi Party. The condition he named is now called reactive arthritis, both in condemnation of him as a war criminal, and because it is a more descriptive term.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu.
