How does a medical condition get named?

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 tem- porary. What are your thoughts? -- E.D.V.

ANSWER: 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.

DEAR DR. ROACH: I am a 64-year-old woman, active and in good health. A friend recently let me use a bit of her ibuprofen topical cream for minor pain associated with an overused muscle. It worked well, without the digestive irritation I often experience with oral ibuprofen. So, I went online and ordered my own tube, which shipped from Macedonia! Do you think this product is safe to use? Why is it not available in the U.S.? -M.H.H.

ANSWER: Topical anti-inflammatories, such as ibuprofen, are increasingly recognized as valuable and less-toxic alternatives to oral anti-inflammatories. The only topical such drug available in the U.S. now is topical diclofenac (Voltaren gel is one brand name), and I have had several patients swear by it, even bringing it back from European countries where it is available over the counter. It requires a prescription in the U.S., and the price has dropped considerably. With a coupon from GoodRx, it is about $25 for a 100-gram tube. I don’t know whether topical ibuprofen will become available in the U.S. anytime soon.

Topical diclofenac appears to be very safe, with itching, rash and burning at the site being the most common side effects.

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 or send mail to 628 Virginia Dr., Orlando, FL 32803.