I cured the 'wrong' disease for 25 years until I found out what I had

I cured the ‘wrong’ disease for 25 years until I found out what I had

At the age of 18, when she was still in college, retired Marcia Duarte began experiencing back pain and eye discomfort. After numerous visits to the doctor, she was diagnosed with MS.

It went on like this for 25 years, until she was diagnosed with a new disease, which was known as NMO (myelitis optica), and had to change her entire treatment for more than two decades. Today, he suffers from some complications of this condition, but little by little he is trying to lead a normal life. Below, she tells her story.

“When I was 18 and in my second month of college, I started to have pain in my back. The next day, I felt the same pain as eating this area. In the past, it wasn’t like it is today and it was very difficult to get the imaging done. Magnetic resonance imaging and computed tomography.

Within 15 days, the pain only increased, and I started losing balance and control of my legs. Suddenly, my left eye started to get dark and I could no longer see anything. I went to an ophthalmologist and he said it could be a teenage thing. Then I went to another specialist, he checked me and saw that I had a lesion and the optic nerve was being attacked.

The next day, the doctor ordered an x-ray of his sinuses and teeth. When I arrived in the morning, the neurologist said I needed to do a lower back pulse to make sure I didn’t have SCI. On this day, I was already in the hospital and took corticosteroids.

The neurologist said it might be multiple sclerosis. At the time, I didn’t know and only listened to what people told me. I had crises, but took corticosteroids to relieve the pain.

The doctor told me that everything was uncertain, and that there could be sequelae, but fortunately the eye injury subsided and my legs were back to normal after I was in the hospital for three days.

“I continued my life normally”

Photo: personal archive

After I got better, I went back to dental school. In full swing, outbreaks of illness, leg pain and allergies, I managed to continue my higher education.

A few years later, I met my husband, got married, and took an immunosuppressant to prevent an outbreak. In addition, I also had to have a blood test every 15 days and continued to do so until I was 28.

Whenever I had an upset, something that made me so nervous, I always had a heart attack afterwards.

During my postpartum period, I was with my newborn daughter and had an outbreak that I didn’t even notice. I felt something in my eyes, slight pain, and it stayed that way for about a week. My eyes started turning “cloud” and I had trouble seeing.

I ran to the neurologist and he said nothing. The other day, I saw less and started taking corticosteroids. The symptoms stopped there, but he left that blind spot, and his left eye had poor focus.

When I was working as a dentist, I realized I needed a quieter job and changed my profession. I participated in a public competition to be a tax auditor and continued like this until I retired.

Diagnosis of a new disease

Marcia Duarte has NMO - 3 - Personal Archive - Personal Archive
Photo: personal archive

When I was 43, in the 2000s, I was asked to find a doctor who was very good in the area. After some tests and counseling, she said I might not have multiple sclerosis, but myelitis optica, aka NMO.

That year, he invited me to participate in a study even with doctors from outside Brazil. In fact, when they found out I had this condition, they saw that I was using substances that I couldn’t use and that wasn’t good for me.

I began to understand the disease better, because in the 1970s, the year I was diagnosed, there wasn’t much talk about it and the symptoms were confused with multiple sclerosis.

case development

Even in the face of all the symptoms, I tried not to ejaculate. When I took the drug, I had swelling, I was a little uncomfortable with my appearance, but nothing too serious.

When my daughter was born, I was worried, because I had a newborn baby girl, I needed to avoid the pain and care so I didn’t get any infections.

I went to therapy to understand the problem and I still do it today. It was hard to feel the pain all the time, here and there, but I became more attentive. I noticed that my symptoms got worse at age 42, then at ages 50 and 60 the signs started getting stronger and limiting me more.

Marcia Duarte has NMO - 2 - Personal Archive - Personal Archive
Photo: personal archive

It didn’t happen overnight, it was very gradual and it “come on” really well. I had a little bit of incontinence and I put Botox inside my bladder so I don’t have to wear diapers to sleep anymore.

Currently, I notice that I have more difficulty balancing and sometimes I use the car seat, but I no longer use a diaper.

I’m retired, trying to take my time and that’s what I’ve been up to. It’s scary for the future, but I’m coping. I’m going to renovate my house to improve mobility and completely change the bathroom. Thank God I have a supportive husband with me for 38 years and a beautiful family.”

What is optic neuritis and how is it confused with multiple sclerosis

NMO (myelitis optica) is an inflammatory and autoimmune disease in which antibodies are produced against a structure called aquaporin 4, which are water channels, and the central nervous system is the main type.

Although it is common to confuse multiple sclerosis with neuromyelitis, these conditions have always been different due to similar symptoms. In the past, neuromyelitis was thought to be a subtype of sclerosis that affected the nerves and spinal cord.

However, the main difference is that in inflammatory diseases, some proteins destroy others that transport water from the central nervous system, which is not the case in multiple sclerosis. The latter is also considered a myelinating disease, in which the myelin sheath, which is responsible for protecting nerve cells, is damaged. In this way it causes damage to coordination and paralysis.

Another difference is that multiple sclerosis appears in outbreaks, but it can develop into a progressive condition. In neuromyelitis, symptoms occur in outbreaks and never develop.

The most common symptoms of neuromyelitis optica are double and blurry vision, eye pain, weakness, dizziness, difficulty balancing, retained urine, urination and tingling. Although they are very similar to those of multiple sclerosis, one very characteristic symptom of MSN is vomiting and hiccups with no apparent cause. It can also leave a person paralyzed.

Early diagnosis with a specialist neurologist is the best way to proceed with appropriate treatment and stabilization of symptoms. In general, according to the doctors he interviewed live wellHowever, not all specialists are able to differentiate between the two diseases, and as with Márcia, rheumatoid arthritis (NMO) can be treated as multiple sclerosis. Improper use of medication can harm the patient’s condition.

To treat the disease it is necessary to use intravenous doses of corticosteroids, and when the patient does not respond to this drug, rescue treatments called plasmapheresis may be necessary, which is similar to dialysis and removes all inflammatory components from the body.

Sources: Leonardo Valenti, a neurologist and professor of the medical course at PUC-PR (Pontifical Catholic University of Paraná); And the Jefferson Bakera neurologist and president of the Brazilian Committee for Treatment and Research in Multiple Sclerosis.

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