It took more than six months to get my diagnosis. I had numbness all the way up my body to my chest, and at first the doctor thought I had a compressed spine fracture. The doctor said it was the result of my accordion playing – the wrong sitting position, holding a heavy instrument for long periods of time. MS was last in the list of possible causes of my symptoms.
I was finally diagnosed with relapsing-remitting MS in 2001 at the St Petersburg State Medical University.
MS causes my legs and body to be numb, and my left leg and arm are particularly weak. My left leg sometimes can’t feel water, even hot or cold; I get spasms and it is permanently fatigued.
The most important consequence is lack of mobility, and then an inability to find work. And now I can’t get the medicine I used to.
The Russian ministry of health wants to support domestic medicine manufacturing, so it has replaced betaferone with a substitute, called ronbetal. Ronbetal was registered without being approved by the State Scientific Research Institute of Standardization and Control of Medical Biological Medicine. This is the national authority that controls medical immunobiological drugs. Ronbetal is much cheaper, but there are a huge amount of side effects. People first refused this medicine, but now it is the only way to get ‘interferon beta 1b’ in Russia for free.
Corruption in Russia is a big issue these days, and it is an issue in the health system too. I suspect that the paperwork is manipulated so administrators can steal money from healthcare. Money – and the corporate interests of Russian pharmaceuticals – are the priority, not people.
The public health system provides only the minimum and low quality healthcare, in defiance of the Russian constitution where it says that medical care is free. Because I refuse ronbetal, I am not taking any medical treatment. Swimming, physical training, mind and mental control, cognition: that’s it.
I live alone, and so far I don’t have any help at home. There is no government support for this. I will study until the end of my days, but I have no work. But because of my disability status I get $200 a month from the government.
As an active person living with MS, I was asked to be the chairman of the Leningrad regional Russian Multiple Sclerosis Society. The society is advocating to the government for free treatment for people with MS, as a matter of federal law.
For others living with MS, I would like to say "never give up".
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