Difficulty in Finding Diagnosis

Hello everyone!

I'm from Volgograd, Russia. I'm 39 years old. I was diagnosed three months ago, but it was a very difficult journey. It started in January 2024. I felt pain in my left knee for no reason. I didn't pay it into account and took NSAIDs. The next day, everything was OK, but after two or three days, it happened again. The next symptom was lower back pain. Not a big one, but it was there.

Doctor number 1

I decided to go to the clinic. The therapist said that I didn’t have a serious diagnosis and prescribed NSAIDs for ten days and nothing more. No X-rays or MRI. No tests. No blood work. After therapy, all the symptoms came back, plus heel pain and constant fatigue. I started limping…

Let's get off topic. I have played football (soccer) all my life. I used to run 10 km three times a week. My energy never ran out. I’ve never took sick leave. Non-stop...work, family, sports... country house. I’m a father of two boys, 8 and 15 years old. We had a very active life. But this year...

Doctor number 2

My second doctor was a neurologist. She did a lot of tests with me. I had an MRI of my lower back. There was nothing serious, just degenerative changes in the spine, which are very common for my age. Treatment was similar: NSAIDs and exercises. As you may guess…everything came back.

Doctor number 3

In March 2024, I had pain in my left knee, back pain, heel pain, and incredible fatigue. I decided to have an MRI of my knee and blood tests. After that, I went to the orthopedist. The MRI report says "traumatic ligament injury." The blood had a high level of CRP. The orthopedist immediately suggested knee surgery. I was even happy. I supposed that it resulted from playing football, and it would be fixed soon. But what about other troubles? The surgery in Russia costs $2000-2500. Insurance may cover it, but I need to wait for half a year. I thought that the surgery would not solve all my problems.

Doctor number 4

I went to Google. I don't like it, but it helped me. I started researching the causes of my pain and finally realized that a rheumatologist is my doctor. Before my first visit, I already understood what was wrong with me. The rheumatologist prescribed me a lot of blood tests and an MRI of the sacroiliac joints. It took me two weeks to get results: HLA-B27 positive, right-sided sacroiliitis, and high-level CRP. I had no doubts about a diagnosis, taking into account the inflammation of the knee MRI. What do you think the rheumatologist said?

“You have no rheumatology problems.”

What??? What kind of problems do I have?

Doctor number 5

Before I went to my first rheumatologist, I subscribed to the “Bechterev’s Disease” (in Russia, it's the name for ankylosing spondylitis) group on VK (a Russian social network). I studied all the symptoms, treatments, and other people's experiences in search of a diagnosis. As you know, this may take five to ten years.

The main advice I followed was, “Be free to change doctors.” And I did. I live in a big city, and there are no difficulties with this. You can go to a public or private clinic. All the services are free in public clinics, but you need to wait some time. In contrast, you can get all the services at a private clinic at once, but it costs money. In both places, there are good specialists and bad ones. I changed clinics and doctors and finally found a specialist who was perfect for me. She carefully studied all my tests, MRIs, and X-rays. After that, she diagnosed me with AS. We always keep in touch.

Treatment

In Russia, treatment is similar to that of the rest of the world. The first line is NSAIDs, the second is DMARDs, and the third is biologics. You can get the third if the first and second don't work. I’m currently using sulfasalazine and etoricoxib. I do exercises with rubber and go to massages. I think it works. The pain level has decreased, but I feel nauseous due to the medication. I'll discuss it with my rheumatologist at my next visit.

I haven't recovered, but I can work. I don't limp, and I can do housework and garden work. I have accepted that football is not for me now, but I hope I can play tennis and go to the gym.

Family is the first priority for me. They always support me. Everything I do, I do for them. This disease won't stop me!

Mikhail - Volgograd, Russia