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This disease is usually diagnosed within six months of the onset of symptoms. For me it took several times longer. I went from doctor to doctor and nobody knew what was wrong with me - says Danuta from Olsztyn, who has been suffering from multiple sclerosis for four years. It is an incurable disease, but thanks to the right drugs, the patient can live almost as before. However, access to treatment remains a problem for most patients.
How did your illness start?
It started out with problems with balancing. I started to fall over, bumping into furniture as I was walking around the apartment. I also felt dizzy and even lost consciousness. At first I thought it was due to overwork, but these symptoms did not go away even after a long rest.
What happened next?
Everyone persuaded me to go to the doctor - so I went to the family doctor who ordered me basic tests. But when he saw the results, he downplayed my symptoms. I almost forced him to be referred to an ENT, because the doctor suggested that imbalances may be related to problems with the labyrinth. However, the ENT specialist ruled out this and sent me to a neurologist. The neurologist referred me for an MRI.
The examination revealed a suspicion of sclerosis, unfortunately the doctor stated that she would not diagnose me on this basis, because there is no basis for it - one result does not prove anything yet. I went to the ENT again. The doctor said that if it was not a labyrinth, it might have pebbles in the ears - and hence these imbalances. After a year and a half of such trips from doctor to doctor, I was taken to the district hospital, where I had an MRI, another basic examination and a lumbar puncture.
Already there, doctors suspected that it was possibly multiple sclerosis. Unfortunately, this hospital did not have a contract with the National He alth Fund for further total diagnostics. I was referred again, this time to a rheumatologist who performed a Lyme disease test. He ruled her out - and referred her back to the neurologist. I found a very young resident lady and she finally made a specialist diagnosis. I spent an hour and a half in the office. The doctor looked through all of themThe results so far, she did additional research and found that everything points to MS. To be sure, however, she consulted it with other doctors. She decided to refer me to the ward and to the hospital. I arrived there in January 2022 and that's when the final diagnosis was made - multiple sclerosis, relapsing form.
The journey from doctor to doctor lasted almost two and a half years from the first symptoms. It got to the point where I was practically unable to move. I was not able to walk even around the apartment, in the usual household chores I was often done by my son - small, then he was only seven years old. He did basic things, he could prepare dinner, he could do the washing, because I couldn't - I could fall over, bending down to the washing machine.
Before diagnosis, did you look for answers on your own, did you check your symptoms on the internet?
Of course, but Uncle Google knows everything and it is very easy to ascribe to yourself diseases that you do not have. However, I am very stubborn and did not let go. Especially since I work near an ambulance service, I have contacts with doctors, paramedics who also tried to help, suggested where to look, what to look for.
Multiple sclerosis patients are treated depending on the form of the disease and its severity. How does it look like in your case?
The first drugs I got were steroids. They got me on my feet, but only for a while. During my next stay in the hospital, one of the professors tried to enlist me in the drug program, unfortunately I didn't get in, I would have to wait in line for about two years. Our hospital, however, cooperates with a professor who specializes in the treatment of multiple sclerosis, and after consultation with him, I was qualified for a clinical trial. For this study, I am taking the medication ocrelizumab, which is given as an intravenous infusion every six months.
Are you able to live like before your illness?
We try. Thanks to the treatment, I avoided the disability and the wheelchair that threatened me due to the fact that my condition worsened day by day. My family motivates me to continue treatment - I want to live and function for the child, for my husband. We have prospects, we make plans. We love to go, visit and we often do it, we go to the forest, to the lake. We are able to get up in the morning, get on the bikes and go ahead.
Do you have contact with other people suffering from multiple sclerosis?
No, I'm not contactingother sick people, I do not feel such a need. Other people suffering from what I see only in clinical trial meetings. I do not feel the need to talk about the disease, because I have a feeling that if I listen to what is wrong with someone, when we start to analyze the symptoms together, then I will take it all personally, refer to my situation. I feel and want to feel like I'm he althy. Certainly - and this is my advice to other patients - it is worth fighting, not giving up, looking for treatment options.
What's next? What are your plans for the future?
In the coming years, I just want to be able to function normally, this is my main dream. I will not be completely he althy, but I would like it to stay as it is, so that I can get the most out of life. Whether it will be possible - it depends on the drugs. When I ask doctors about prognosis, they are optimistic. The worst thing, however, is that the clinical trial lasts for a certain period of time. What will happen next, we do not know.
Maybe there will be a treatment option resulting from another clinical trial, maybe the drug I take will be reimbursed, maybe I will be able to get into the drug program. I know that without treatment, I will not be able to live my life as usual.