My Chronic Pain Was Caused by Lupus, an Autoimmune Disorder

• I have suffered from chronic pain for as long as I can remember and have seen many doctors because of my symptoms.
• After over 10 years, I was finally diagnosed with lupus.
• Now I drive from New York to Baltimore to be treated by a rheumatologist.

My earliest memories are of doctor’s appointments and being up in the middle of the night in pain. diagnosed with gastroparesis, or stomach palsy was 3 years old and it wasn’t long before I also started experiencing joint pain. Doctors told her mother that I was experiencing growing pains and that the pain would go away as I got older.

When I was 10 years old and the pain spread from my legs to other parts of my body such as feet, hands, elbows, shoulders and neck, my mother took me to the doctor. She was diagnosed with something called undifferentiated connective tissue disease, or UCTD. This means that I am showing symptoms of connective tissue disease, and blood tests have proven it, but my symptoms are clear enough for doctors to say what I have. However, because of my family history, I was fairly certain that I would eventually receive a diagnosis of lupus.

have an autoimmune disease in the family

my brother has Crohn’s disease, my sister has lupus and my mom deals with both. I was on what my family doctor often referred to as “the Cohen family’s footsteps,” but they still couldn’t diagnose me, so I didn’t get proper treatment.

I suffered terribly with symptoms throughout puberty, which worsened after puberty. I had had enough and nearly collapsed on the subway one day when I started experiencing severe pain-induced tremors. .

During this search for diagnosis and treatment, I saw several doctors. I presented them with my medical history and my family history of autoimmune disease. I have had some disappointing experiences.

One doctor said my symptoms were caused by being overweight and that dieting would make me feel better. said he only ate one meal a day. My doctor told me to restrict my diet even more.

Another said, “Don’t jump to conclusions” about what’s going on because of my family history, and said my blood tests didn’t point to any serious problems. , diagnosed me with Sjögren’s syndrome based on two symptoms of dry eye and dry mouth. But I knew Sjögren wouldn’t explain all of my symptoms. cheek rashwhich is a common symptom of lupus — so I kept looking for another opinion.

Another rheumatologist also diagnosed me with Sjögren’s without proper testing. Additionally, both my dry eyes and mouth were relatively recent symptoms. It was quite possible that I had developed Sjögren’s disease in addition to something else, but I was tired of being told there was no answer to my lifelong struggle with my health.

I kept looking for a meaningful diagnosis

But thankfully I didn’t give up and had another option. From the time I was a little girl, my mother was under the care of Dr. Michelle Petri and Dr. Marisa Miz, a rheumatologist at Johns Hopkins University. Mizus is based in Baltimore, but I made an appointment. He told a rheumatologist in New York about it, and he seemed happy to get a second opinion.

During my appointment in Baltimore, I finally heard the words I had been waiting for for over a decade. Mizus said that given my family history and blood work, as well as symptoms common to lupus, such as erythema and lupus alopecia, I very clearly met the criteria for SLE or systemic lupus erythematosus. took into consideration all of my symptoms when diagnosing me, rather than picking a specific symptom that matched another diagnosis.

I finally listened and felt like I was on track towards a proper treatment plan. gave me

When I got home and saw my rheumatologist in New York to talk to him about my new diagnosis, he disagreed and gave me the choice of continuing treatment with him or continuing treatment with Ms. He said he wouldn’t treat me for lupus because he didn’t believe I had lupus. I decided to follow my gut and took him off my doctor.

I’m getting quality treatment for lupus and wish I didn’t have to travel 4 hours for it

I am still being treated for SLE and see Ms. Su as a rheumatologist in Baltimore, but have yet to find a local doctor to work with her. Getting an initial appointment with a specialist is difficult and starting the whole intake process all over again can be tedious. I was waiting for it to be possible.

It’s hard for me when the only doctor who will listen to me is a four hour drive away. She is actively treating my illness and taking the necessary steps to keep it under control. She listens to me when I tell her what’s going on with my body and luckily I commute every 3 months to her 6 months You can afford to go see her, but you shouldn’t do it this way.