The Doctors Said TMJ, But the Patient Said Giant Cell Arteritis

One 66-year-old patient who lives in Poughkeepsie, N.Y. received the same diagnosis from three doctors. Each doctor suggested that his symptoms pointed to temporomandibular (TMJ) joint pain. The patient and his wife disagreed. They were determined to find a solution.

The New York Times Magazine published details of the patient’s ordeal. He began to experience continuous, unrelenting pain each night for weeks. He would wake up from a deep sleep with a pressure-type headache that felt like it was squeezing his brain. The following morning things would be almost back to normal, but he would still be left with tenderness in that area to the point that even brushing his hair would be uncomfortable.

After several weeks of not having a full night’s sleep, he began to experience severe pain in his jaw. A visit to the dentist resulted in a diagnosis that he possibly had TMJ, affecting the joints and muscles that control facial expressions and speech. The dentist suggested a mouth guard at night as he may be grinding his teeth.

The couple did not find this satisfactory and contacted a dentist who specialized in TMJ. This dentist was uncertain about the cause of the pain and recommended a sleep clinic.

A Diagnosis From An Unusual Source

Swimming had always been relaxing, but this time, it resulted in a trip to the hospital emergency room. While he was in the middle of swimming laps he turned his head for a breath and experienced severe pain. It wrapped around the right side of his head to his jaw. For a moment he could not move or speak. He managed to get to the side of the pool, and with help from his wife they rushed to the regional hospital.

While in the waiting room his wife received a text from Sarah Cope who worked as an assistant for her husband. He had told Sarah of the pain he was experiencing.  Sarah texted back within a half-hour asking if his scalp hurt. Sarah told them that she just researched a disease called giant cell arteritis (GCA), which is inflamed arteries in the brain. She said that she found an article about a man with the exact same symptoms who was diagnosed with (CGA) but was initially told that he had TMJ.

An Amateur vs. Professional Opinion

The patient’s wife searched for GCA on her phone and found that it was a rare autoimmune disease. GCA causes pain and inflammation in blood vessels in the brain and face. Her husband joined her in reading about patients diagnosed with GCA plus its description and symptoms. GCA is most common in people over the age of fifty and those of Northern European descent. The couple noticed that the symptoms listed were very similar.

The attending ER physician was Danielle Belser, M.D. After examining the patient, she explained that the cranial nerve (trigeminal nerve) runs from the brain and is responsible for sensation in the nose, mouth, and facial skin. Dr. Belser told the couple that if the trigeminal nerve is injured it will result in severe pain in one of those branches.

But while the doctor was explaining trigeminal neuralgia, the couple shook their heads in disagreement. The patient’s wife said that she had the disorder several years ago and the symptoms of the two disorders were dissimilar. They said that they hoped the doctor was not offended, but they did not believe the diagnosis should be trigeminal neuralgia. Dr. Belser said that she was not offended, especially since trigeminal neuralgia was going to be her next suggestion.

Blood tests were ordered to determine if his counts were high. If so, it would be a sign of significant inflammation and possibly GCA. A biopsy of his temporal artery was also ordered.

When The Immune System Attacks

The immune system is designed to protect the body from bacteria or viruses that cause infection and disease. In autoimmune disorders such as GCA, the immune system goes on the attack against the same organs it should be protecting. In GCA this means blood vessels in the eyes, face, and brain. If left untreated it can cause strokes, blindness, or heart attacks.

It is suggested that if GCA is suspected, treatment with steroids should begin even before receiving biopsy results.

As soon as Dr. Belser saw that the blood tests were positive she began treatment with a high dose of prednisone, a steroid. The patient would be taking the drug for months. After the first few doses, the headaches were no longer a problem and within one week he was able to eat. The biopsy confirmed that it was in fact GCA. Although he is being gradually tapered off prednisone, his rheumatologist is not certain when he will be able to discontinue the drug.

And in conclusion, Sarah Cope is pleased to have been of help and is even more confident now about her research ability.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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