The history of rheumatoid arthritis by Suzy Katz

When my right knee increased double its normal size in the summer of 2016, I did not know it yet, but it would start an eight -year -old medical mystery that no one could resolve.

He started as dull pain, then developed as a stiffness, returning to the embarrassment. In a few days, my knee was swollen and hot to the touch. I went to bed and woke up in a panic when I couldn't fold my knee and go down the stairs from my six -story apartment in New York. I called an ambulance and I was taken to the emergency room on a stretcher.

In the hospital, I was pushed and pushed unanswered on what caused my mysterious symptoms. The doctor sent me home with a prescription from Naproxene, a non-steroidal anti-inflammatory (NSAIDs), and said that I should see a rheumatologist, a doctor specializing in the conditions of joints, muscles and bones.

The rheumatologist ordered blood tests and quickly diagnosed me with Lyme disease. It was surprising, but at least I had an answer. I had traveled in the north in November, and even if I have never found a checkout on me or the revealing signs of Lyme, like the eruption of the eyes of the bull. It was not inconceivable that I had been bitten and infected during this trip.

To help the symptoms, the rheumatologist drained the liquid of my knee. First of all, they numbed the area with a Lidocaïne spray. Then they inserted a large needle just under my flap and removed the transparent synovial fluid, which lubricates the joints so that they can move easily.

The procedure was painful, but I was happy to relieve part of the pressure on my knee. I conscientiously followed an antibiotic course, while waiting for a quick solution. My relief and my feelings of well-being were short-lived when, a few months later, my symptoms returned.

My knee was swollen again and full of liquid. I became frustrated and upset when I could no longer walk on long distances or take my gym lessons. I returned to see my rheumatologist, who carried out additional blood tests and confirmed that my laboratories were away from Lyme disease.

I went to another rheumatologist after not having arrived with the doctor of origin. This doctor also said that he had found no cause for swelling in my knee. He tried to prescribe anti-inflammatory drugs and topical (pain relievers) analgesics, which did not help.

Finally, after a lot of plea on my side, I convinced the doctor to manage additional straps, and he said that he was showing that I was always positive for Lyme disease, so I did another antibiotic lesson.

When my swelling has not improved and it has become more and more difficult to move, I changed doctors again, looking for anyone who agrees to suck my knee. Again and again, I was told: “Your laboratories are normal. Maybe it is overuse. Maybe it's stress.” A doctor tried to convince me that the right knee was “always” larger than the left.

I felt more and more deflated by my health and frustrated by health professionals who were disdainful about my very real pain. I lost friends who did not want to be with someone who always complained about his knee.

Convinced that I suffered from a persistent Lyme disease, I read medical studies on Lyme disease and found online support groups. I was hoping to get new treatment ideas, including treatments that I had never considered before.

I spent hundreds of dollars from their pocket on alternative therapies such as vitamin perfusions and ozone therapy after physiotherapy, suction cups and acupuncture did nothing to strengthen my knee or solve pain and swelling.

An integrative medical doctor put me on many experimental treatments for Borrelia BurgdorferiLyme disease bacteria, despite not showing symptoms for the disease apart from my swollen knee.

A treatment included a dose of antabuse (disulfiram), a drug used to treat alcohol consumption disorders which are sometimes prescribed in small doses to treat Lyme disease. I developed neuropathy, tingling and burns in my whole body, and I quickly stopped all the treatment.

As a last resort, I found an additional rheumatologist who knew Lyme disease well. She did something that none of the other rheumatologists was ready to do: she listened and was open to try something different. She agreed to suck my knee again and tested the synovial liquid that she removed for inflammatory markers.

Thanks to the results of blood tests, the analysis of joint imaging and my history of symptoms, I was finally diagnosed with seronegative rheumatoid arthritis. It is a form of rheumatoid arthritis which does not present itself in blood tests but produces the same symptoms. She suspected that my Lyme disease may have caused the autoimmune reaction that led to rheumatoid arthritis.

With a diagnosis in hand, I started weekly injections of Enbrel (tutoring), a drug that reduces inflammation by blocking the protein of the tumor necrosis factor (TNF). The change was almost immediate.

For the first time in years, swelling and pain have disappeared. I could go through a metro station without developing a strategy to sit. I recovered my life in exchange for an unpleasant but tolerable weekly shot in my thigh.

Enbrel also lowered my immune response, so I had to be more careful to avoid the disease. However, the ability to move and return to the gym was worth it.

I hope that doctors are faster to say: “I am not sure” and consult other health professionals before rejecting my pain as unimportant or psychological. If there had been more humility, more desire to listen to and less medical paternalism (health care providers making decisions for patients without informing them correctly because they believe that they know best), I might have been able to receive my diagnosis and my treatment for years earlier.

Rheumatoid arthritis is an autoimmune disease that has no healing, but with early intervention, joint damage can be avoided and effective management of the disease can maintain patients at ease and painless.