“When very unpleasant tingling invaded my left hand, eight years ago, I first brushed off the symptom with a: “I had to sleep on my arm”, while the happy weekend with friends continues. But their persistence, coupled with a similar belly feeling, lets worry creep in. My husband’s father being a doctor, he directs me to a neurologist, who sees in my sensory disorders the translation of stress and fatigue, and he advises me rest. However, my father-in-law being one of his friends, he still prescribes me, “to check“, a Brain MRI.
Without that, I would undoubtedly have started a long diagnostic wandering, failing to present the symptoms – visual disturbances and/or balance and/or urinary incontinence – which frequently occur during the first push of multiple sclerosis (MS), an autoimmune disease of the central nervous system. In the days that follow, there are electric shocks in my back, when I bend over, as well as immense fatigue and the feeling that my bones “ring” hollow. I find out on the internet that it may be MS. An abyssal anguish overwhelms me. “Will I die? How much time do I have left? Will I be disabled? Will it be possible for me to have children?”
Read also:Testimonials: Suffering from multiple sclerosis, they chose to have a baby
The MRI increases my fears, because I’m leaving without a word or any information : I only receive the report by Internet. From medical jargon, I only understand “lesions”. Frightening ! Especially since I have to wait a week before seeing the neurologist. A psychological torture… Which is followed by the diagnosis, which falls like a sentence. Tears, anger, incomprehension, despair go through me violently. However, the neurologist wants to be reassuring: you don’t die of MS and, if it is not yet cured, treatments slow down the outbreaks of the disease, the frequency and intensity of which differ from one person to another. A second neurologist, specialist in MS, is even more so: “In your case, I’m not worried. There are fairly mild forms with which one can live very easily, without developing a disability. No treatment at the moment.” And he encourages us, my husband and I, to realize our baby project, knowing that, during pregnancy, the disease pauses, under the beneficial influence of the strong hormonal impregnation. Result: the symptoms disappear. The corollary? The risk of having a relapse within three months after childbirth, due to the hormonal drop.
The fear of a flare-up during pregnancy
Two months later, I am pregnant with my first son, who is now 7 years old. After several months without symptoms, they reappear under the effect of fatigue from childbirth and shortened nights. And in their wake, the fear of a flare-up and therefore of the progression of the disease. But, good news, I learn that their resurgence does not necessarily sign the beginning of a push: fatigue is the only cause here. Two years later my youngest was born. The symptoms return in a new form: my legs suddenly weaken in the street. They no longer carry me. I’m afraid of falling so much that I sit on the doorstep of a building. THE tingling also earn my right foot. This is my second push.
The time has come to start a immunomodulatory treatment (interferon) to halt the potential progression of the disease. I opt for an intramuscular injection on a weekly basis, in order to limit the side effects – flu-like syndrome : fatigue, migraine, nausea – in the hours following and the day after the injection. Indeed, the more space, the greater the dose administered and, therefore, its effects. Today, my husband took over from the nurse to make them for me. This preserves my children as much as our family life. My eldest was very worried about me seeing the nurse so often. It remains psychologically difficult to bear the recurrence of the treatment, but I have almost no symptoms anymore. and the second flare was 4 years ago. I am resolutely positive and I remain fully active in my life, of which I savor the happy moments with my three suns. I accepted the disease, but I don’t identify with it and I don’t want to be identified with it. MS does not define me. I am a mother, a wife, a comic book author, this is my identity, and not that of a sick person!
