The first symptoms of my disease appeared at the end of 2008 and it is the start of my long quest for the right diagnose which turned out to be quite a challenge.
First I visited an orthopaedic hospital where they suspected a neurological condition – spasmodic torticollis. I got a soft cervical collar and the effect was disastrous – the spasms even worsened. Then came a questionable diagnosis of psychogenic cervical dystonia, despite the fact that the EMG scan showed excessive muscle tension. I waited more than a year for a proper diagnosis and the right treatment.
With time I noticed
that when I was talking to people I had to hold my head which uncontrollably turned away. It looked as if I was neglecting the other person. My shoulder was jerking upward and the pain was unbearable. The new symptoms really scared me.
I tried physiotherapy but it not only did not help but even aggravated my condition. The doctor referred me to a hospital where I underwent a whole range of examinations and tests and still nobody knew what was going on.
I was overwhelmed
It got to the point where I could not hold my head straight, I had to use a straw to drink from the glass and I was eating while holding my head with my hands. Due to my condition I was made to leave my job. I got a disability benefit for six months, then for one year more and, subsequently, they denied me the right to the benefit. I went to court and spent two years engaged in a legal battle with the social security fund which firmly defended its decision. The discharge from hospital with a suspected diagnosis of psychogenic dystonia did not help but fortunately the court appointed medical experts were on my side and even suggested rightly that the real cause of my problems may be segmental, not cervical dystonia. When the diagnosis was confirmed, I fell to pieces. It is really hard to accept the fact you have a very rare condition which is incurable. The only comfort was that it wasn’t a fatal disease.
My battle against dystonia goes on
I have changed a neurologist and the new one has a completely different approach to the disease which works much better with me. I am stronger and much more experienced now. Although pain has become an inseparable element of my life, I know now what I can afford to do, especially with the right physical therapy. I try to enjoy my life as much as possible. Despite my condition, together with my husband we continue to pursue our passions which include fishing and travelling.
My family gives me a lot of support in my battle against dystonia. My husband drives me to my doctor appointments and is a great help. My daughter keeps motivating me all the time. My parents are also helpful, although quite a long time had to pass before they learned to understand the disease. I’ve gone through a number of breakdowns and periods of despair, but today I have a positive attitude to life and try to cherish the best moments. My emotions have changed, I have learned to live with dystonia and look at it from a different angle now. I have not surrwndered and I’ve found a reason to live: I help other people.
In Poland, patients still struggle with incompetent treatment, arrogance and insufficient awareness of the disease, even among physicians. There is no proper diagnostics and very little information about dystonia. Over the years, I have experienced a lot. I almost lost my life due to deep vein thrombosis. All that made me feel I have to fight for myself and engage in the dissemination of knowledge about dystonia. I started a blog where I regularly describe how I cope with the disease. At first I did not believe in the success of my blog but now I am really impressed by the number of viewings and comments left by people like myself. I am an active member of a Dystonia Poland support group and I take interest in various medical subjects and conditions.
My passion inspired to me to launch a new site which is quickly growing: a support group for patients with rare neurological diseases.