Julia Lefelar, a resident of Gaithersburg, MD, was telling a friend about her years of seeing different doctors trying to find the cause of her illness. After a while, her friend interrupted and told Julia that she will either recover and never know the cause of her illness, or her condition will worsen and then the doctors will finally figure it out.

According to a recent article in the Washington Post, both scenarios were played out.

Julia’s First Attack

Julia’s symptoms began in 2000 with a common cold, but there were other unusual symptoms. She was strangely fatigued and had sharp pains in her eyes. When she recovered from the cold and went back to work, she found it necessary to take a nap during lunchtime just to manage for the rest of the day.

There was also a “dimming” of her sight to such a degree that she questioned her husband about the lighting in their kitchen which was usually very well lit. Her doctor attributed the symptoms to stress and recommended that she try to rest more. Yet Julia was disappointed that he did refer her to another doctor nor take her seriously.

Fortunately, the symptoms eased after one or two months and finally disappeared. The hiatus was short-lived; however, as Julia’s symptoms reappeared in 2001.

The trail of doctor visits seems to be endless. In 2001 with the recurrence of symptoms, Julia made an appointment with an internist specializing in sports medicine. The new internist ordered blood tests but could find nothing that would cause her symptoms.

A cardiologist was recommended who would monitor her heart palpitations. He used a device that tracks cardiac rhythm. His diagnosis was a condition called premature atrial contractions usually caused by stress. Julia was advised to make an effort to manage her stress levels.

The Next Recommendation: Increase Fiber Intake

The gastroenterologist Julia consulted about continuous nausea performed a sigmoidoscopy. The test involves examining the lower section of the colon. His advice was to increase fiber, but it did not relieve nausea.

Julia was disappointed in his advice and made an appointment with her internist. This time he advised her that she was depressed and referred her to a psychiatrist.

Back to the Beginning

Julia only paid one visit to the psychiatrist. He told her that he does not know what is wrong with her, but he believes that her illness is physical. The psychiatrist also told Julia to find another primary care doctor

The Third Internist

Julia made two trips to see the third internist. Reviewing the new blood tests, the doctor explained that she may have had a prior infection caused by a bacterium called mycoplasma. Julia was prescribed antibiotics to be taken for one month.

When she saw some of her symptoms subside, she convinced herself that mycoplasma was the cause of her illness and that she could live with it.

A Short-Lived Return to Normalcy

 The antibiotics were effective. Julia said it was the first time in six years that she felt almost normal. She had less fatigue, and her other symptoms were infrequent and manageable. She assumed it was all due to a change in her diet. No alcohol or caffeine and improved eating habits.

That was in the year 2006, but the symptoms returned in 2014. It began with a cold and pain in her eyes. Then the darkening vision.

The next internist sent Julia to see an ENT specialist who diagnosed a possible sinus infection. He prescribed antibiotics. Julia felt it was time to see an ophthalmologist. This would be the first time in years that she had her eyes examined. She now admits that she regrets putting it off for so long.

Optic Neuritis

The ophthalmologist was certain that his diagnose of optic neuritis was correct. He explained that Julia had inflammation normally associated with multiple sclerosis (MS), a disease that affects the central nervous system.

Julia was referred to a neuro-ophthalmologist who is trained in both neurology and ophthalmology. The neuro-ophthalmologist treats visual problems originating from the central nervous system. Julia was prescribed a high dose of steroids, and her vision was once again normal. The doctors told her that her vision problems may not recur.

And yet they did recur once again in both eyes. But each time Julia took the steroids the attacks would recede.

Julia was then referred to a neuroimmunologist, Dr. Michael Levy, at Massachusetts General Hospital in Boston. His diagnosis was neuromyelitis optica, which is a rare disease. It occurs when a person’s immune system acts against healthy cells located in the eyes and spinal cord. The result is vision loss and pain. There are about four thousand cases each year in the U.S.

Julia received infusions of the drug rituximab that treats specific cancers and autoimmune diseases. The response was less than expected, and a second test did not indicate any trace of NMO.

Essentially Blind

For three months in 2004, Lisa described having just a “little strip” left in her vision. She was almost blind and was on disability.

Then her vision began to return, but some blind spots remained. Colors still looked washed out. However, the improvement was enough for Julia to return to her job as a software engineer.

But Julia’s problems were not over yet. In 2017 she began to notice a weakness in her legs. She also began to lose control of her bladder. It was obvious rituximab was no longer effective. Dr. Levy ordered a blood test that was developed for a disease called MOG, an acronym for myelin oligodendrocyte glycoprotein antibody disease. Julia tested positive for the disease. It has been seventeen years since her first attack, but now she had the answer.

MOG is the result of antibodies attacking a protein that is found along the myelin sheath surrounding nerve cells located in the optic nerve and sometimes in the spinal cord and brain. The demyelination disrupts nerve cell function resulting in optic neuritis, nausea, fatigue, and vision loss.

Standard guidelines for the treatment of MOG do not exist. However, a high dose of intravenous steroids is generally used to combat inflammation. Drugs that subdue the immune system are also a consideration.

Dr. Levy explained that MOG was initially considered a variation of MS but is now regarded as a distinct disease. He cautions against using MS treatments for MOG patients as that can have an unwanted effect.

Julia now administers intravenous infusions to herself at home. She has not had any attacks since 2017. Julia, who is now 58, looks back at those 17 years with mixed emotions. Memories of pain, frustration, and fear of dying when no one could tell her why. She also felt sadness and anger for so many things that she missed.

Looking on the bright side she says that now, at the 22-year mark, she has a good life being able to drive, work, and maintain at least 95% of her vision.

Julia and her family founded the nonprofit MOG Project that she hopes will raise awareness and encourage research into MOG.