When you hear MS, you think wheelchair, paralysis, then to sand. At least I thought so. Until it turned out that my friend suffered from sclerosis. The same one who bought my scooter traveled half of Europe in a camper and just after a 20-year break, she started climbing the rocks again.
From my studies I remember an eyeglass with a hellishly cut tongue, as thin as a board and as hard as a board. Glasses, sense of humor and hardness are important in this story. For her eyes, or rather their miserable power (-6 diopters) led her to a diagnosis, and a sense of humor and stubbornness allowed her to deal with it for now. A stroke of luck was also useful, although at the beginning it seemed to be lacking.
– I went to a picnic in the mountains and began to see with one eye as if through a fog. I think 400 km by car, it’s hot. Something happened to me, it will pass soon. But when I stopped seeing anything on the third day, I went to the doctor in Żywiec. He said everything was ok – says Anna.
The same was said by another ophthalmologist in Warsaw. And the third. Fourth too.
“They were giving me steroids and I was bouncing from hospital to hospital because they directed me to ophthalmology instead of neurology. Later, I found out that this disease is said to be a patient who sees nothing and the doctor sees nothing. It was retrobulbar optic neuritis, very often the first indication for a diagnosis of MS.
The steroids worked, and the eye was back to normal. Someone sensible finally directed her to the MRI. The neurologist saw changes in the brain on the results and diagnosed MS. She was 39 years old.
– It is estimated that in Poland there are 40-45 thousand. patients with MS. Most often, young adults, people between 20 and 40 years old, suffer from the disease. – says Dr. Aleksandra Podlecka-Piętowska from the Department of Neurology of the Medical University of Warsaw. – We diagnose sclerosis in older people more than before. In the past, when someone was 50 and had a bad walk, everyone waved their hands that they were so old, that they were old. Today we are doing neuroimaging for him and we can diagnose MS.
The essence gait is characteristic, limping, and of a duck. And when imbalances do develop, even getting the buns becomes a challenge. But not for Anna.
– There is an EDSS Disability Status Scale that tells you how sick you are. 0 is healthy, 10 is death. At the worst moment, I was 3,5 and I could hardly walk, without a cane I would not leave the house. There was no feeling in the skin from the waist down, as if I had both legs anesthetized.
However, it was not enough for her to let go of the trip planned with her son for a year. Unusual tourism is their religion and they will not get into it. So they left. To Kiev and the Chernobyl region.
– I figured they would lead me at most. Indeed, my 17-year-old son was pulling my arm down the street as I was staggering from curb to curb. Mother said cool, come on take it easy, everyone’s drunk here.
Anna is one of the most laid-back people I know. But even she had moments when she found that slack was no longer enough.
– Once in a bank I couldn’t sign myself. Being illiterate, my hand didn’t work, I couldn’t guide the pen. Then I stopped eating in public because I felt stupid not to be able to hit the spoon in my mouth. No shame, no? An alcoholic or a twisted one. You’re not going to explain to everyone at the corporate cafeteria that I’m sorry, but I’m having an SM throw and now I’m spilling the soup.
Anna works in a media corporation. Bosses and colleagues know about her illness and nobody is bothered by it. Maybe only those who are chased by Anna, so that they don’t come with a fever and blow on the air conditioning. Because they will go away, and when she catches the virus, something will catch fire in her brain again, which will start to shut down her organs one by one. This is more or less the most common relapsing-remitting form of MS that she has. The disease destroys nerve cells in the brain, so impulses along the nerve pathways in the brain and spinal cord are no longer properly transmitted. As a result, the patient loses sight in one eye, or hearing in one ear, stops walking or moves his hands. If he is lucky, he is almost back to normal after treatment. Almost, because every throw leaves traces of damage in the brain.
– After each roll, it takes a little longer and harder to heal. The more relapses, the greater the health loss, such a decreasing sinusoid. I am lucky, because after four retrobulbar neuritis I should be completely blind, sometimes even after one inflammation my eyesight does not return. And I can see normally, only the blue neon lights blur.
Medicine has yet to find a cure for MS.
– Multiple sclerosis is a chronic disease and cannot be cured. But you can and must be treated – says Dr. Aleksandra Podlecka-Piętowska. “ Relapse itself is treated, and we are implementing disease modifying treatments to prevent relapses and symptomatic treatment to minimize residual amounts.
Relapses are treated in the hospital by administering intravenous steroids over several days. But it’s not the relapses that worry doctors the most.
– The neurologist is interested in what form the patient will be in 10 or 20 years. It depends on the degree of brain atrophy. We try to prevent a patient from the relapsing-remission phase from entering a progressive phase, which we are no longer able to treat, for as long as possible. Therefore, we administer drugs modifying the course of the disease as early as possible in order to minimize the degree of brain atrophy – says Dr. Aleksandra Podlecka-Piętowska. – But not all drugs are for everyone. We select them individually, calculating the potential profits and losses.
There are first, second and third line drugs in MS, a bit like weapons, short, long, and nuclear. Anti-hardness guns reduce the frequency of throws by 30-50%, but for some patients they are too weak. Then from the arsenal are rifles, second-line drugs, effective but, for example, potentially teratogenic and leaching out of the body for a long time (which is important for women who want to get pregnant). They can reduce relapses by up to 68%, but they have an adverse effect on the heart and increase the risk of infection (which can also trigger a relapse). And finally, the third line, the weapon of mass destruction of lymphocytes.
– An armata that is rarely used is, for example, alemtuzumab, a medicine given once a year. It contains antibodies that destroy all the patient’s lymphocytes. It is implemented only in very severe cases, because it is very effective, but it causes enormous havoc in the body. 40 percent after him, patients developed severe thyroid disease, there were even deaths – says Dr. Aleksandra Podlecka-Piętowska. – Unfortunately, the availability of treatment is not what it should be, not all drugs are reimbursed by the National Health Fund, there are too few centers that treat second-line drugs. It must be admitted, however, that the situation is slowly improving and the availability of treatment is increasing, although of course the expectations are even higher. An alternative, often very beneficial for patients, are clinical trials, I have a group of patients for whom participation in them was very effective. Exactly as for Anna Szczęściary.
– I heard after the diagnosis. We can put you on the waiting list for interferon treatment. Waiting time of two and a half years. Well, for God’s sake save me now, it’s always one day less! And the doctor replied that I could also take part in the research program. I was able to draw a placebo group, but I ran into a control group, and for two years I had an interferon injection in my leg every Friday. On Friday, because I usually died at the weekend.
The injection is under the skin, a tiny syringe, half a cubic centimeter. And then the driving starts, symptoms like severe flu, fever, chills, headache. So normal side effects.
– I was lying under the blanket and I couldn’t get up, a day or two taken out of my resume. The worst thing was that I had an injection once and it was dead, and in a week I tried to make it dependent on the weather, pressure, well-being, phase of the cycle, the one in which I stuck my leg, using complicated charts in Excel. Nothing, I didn’t catch any regularity. I was dying or I was not.
After two years, Anna switched to the oral drug, which is in the last, clinical stage of research. He has been swallowing it every day for 4 years.
– Interferon has an opinion among essayists that it is a terrible evil, that it is better to heal with herbs and homeopathy. I am deeply convinced that chemistry works. I feel like I was before the diagnosis, I had my last relapse in March 2012. When I brought a new MRI to the doctor, she said that I had no new changes and that the next stage was a miracle, I would have to recover. My child claims that I am a mutant and will be the first person to recover from MS.
Knowing her, it’s quite possible. He is 45 years old and has a moderate degree of disability. From April to November, he rides a scooter to work, spends his holidays exploring the coast by bike (the distance from today is 18,8 km), in winter he goes Pilates (out of common sense, because he hates it) and goes skiing in a motorhome.
– I have never practiced any particular sport, but I also did not lead a chip-couch lifestyle. I always go round, inflate this wheel, and I plant something in the garden.
She caused a small commotion among friends on Facebook by making a quick poll – is it better to save the remainder of the money for the stroller and the dark future, or to spray it on climbing equipment. Equipment won. All because she let her son return to his old hobby, i.e. climbing rocks again.
Dr. Podlecka-Piętowska applauds Anna loudly: – I ask new patients with MS if they play sports. 90 percent say no. And I said to them that they should. Maybe not extreme sports right away, but general development, yoga, pilates, swimming, tai chi. It is very important to persuade patients to be active, because a common symptom of MS that is difficult for others to understand is overwhelming fatigue. It is not medications that help, but occupational therapy and regular physical activity. And in general, the message is like that, oh God, I’m sick, now it’s over! The worst thing is when the patient withdraws into himself and recollects his illness.
Anna remembers hers when she has a strong stress. Suddenly she loses feeling in her fingers or her eye drops out. This is called alleged projections, something like an echo of the real ones.
– So I try not to get nervous and do stupid things, like crossing Orla Perć, the most difficult tourist trail in Poland. My doctor says that she would like all patients to have such ideas, because you have to live with the disease, not celebrate it. I just never accepted that I might not get out of the roll. I do not know to what extent my self-denial that I will regain my eyesight or fitness and will ride a bicycle again had an impact on the fact that I was actually starting to do it. But it just never occurred to me that my eyesight would not return, there is no such option. I am alive, as my colleagues say, on fire or not at all. And so far it works.