The insidious disease
Written by amine, published about 1 year ago.
Hi there,
As I already said, at one point I thought the worst was over. It was a few weeks ago. Then, I realized that I was wrong and that maybe the worst is yet to come. Otherwise ... voila .. I don't feel well, I carry the heavy burden of this horrible disease, alone, for 9 years now ...
My worst problem is arthritis (osteoarthritis) at the left and right joints of my jaw, with a deformation that disables me for the past few months. I take medrol (4 to 32 mg / d) , colchicine, and in the past I took sulpiride and diprostene injections ....
My worst years were the first two or three... I had mouth ulcers, erythema nodosum, arthritis, pseudofolliculitis, and terrible headaches. For four or five years now I have only had mouth ulcers, arthritis and headaches. I will spare you the details of my pain. Now I am taking care of myself, humbly, I have experienced many things... For mouth ulcers I crunch medrol directly without swallowing, so as not to suffer from the side effects of corticoids. I only take that drug if I cannot help it.
I have the impression that steroids camouflage the pain but do not stop the inflammation .... I can also tell you that anti anxiety medication, antidepressants and other drugs affecting the central nervous system almost stop the disease if treatment is continuous over a long period ... I am convinced that the origin of this disease is the central nervous system and that research must be done in this direction. I can voluntarily provoke a crisis of Behçet's ... therefore, the origin of this disease is the brain.
On the social side, I haven't had a social life since I got sick... People look at me with a mixture of pity, indifference and scorn, yes. Thank you all, I think this disease affects a category of people whose psychological state influences the chemical functions of their brain... which then cannot function correctly and manages the immune system anarchically.
I fear the worst, the neuro-Behçet's, but here I still have paraparesis and paresthesia ..... Go, good luck friends, you are the strongest, you are able to control the function of your brain, directly or indirectly, Not everyone is so lucky .......
amine_tagarins@yahoo.fr
Written by amine, published about 1 year ago.
3 comments for «The insidious disease»
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j'ai lu votre témoignage depuis longtemps et vous souhaite bon courage pour vos études de médecine qui sont longues, dans votre pays aussi, il me semble, comme ici en FRANCE? surtout soignez vous et évitez d'être malade en prenant vos médicaments qui empêchent chez vous la maladie; ah si seulement, la prise des antidépresseurs seule empêchait chez tous les malades, de grosses poussées de la maladie de BEHCET à tous les coups, ce serait extra!!on souffrirait moins et on ne serait pas gravement malade parfois!
courage AMINE et surtout gardez le moral . Et je suis sûre que dans tous les pays, on peut trouver de bons médecins..et si votre électromyogramme était négatif, soyez heureux de ne pas avoir de neuro behcet car c'est trop grave. Amicalement, Dominique
Merci, Dominique. C'est la rage qui me fait dire parfois des betises. et pourtant, de l'avis de tout le monde, je suis un sage. Merci, Dominique. J'en veux à tout le monde, c'est plus fort que moi.
Bonsoir Amine , je viens de lire votre histoire qui est au fond l'histoire de chacun de nous pour avoir vecu longtemps dans la souffrance et la douleur sans remède ni diagnostic.Je comprends votre rage à un age où l'on a envie de changer le monde . Faites-vous des etudes de medecine en Algerie ou ailleurs ? Je suis algerienne comme vous. J'ai souffert 18 ans sans savoir ce que j'avais alors que je vis en Italie . Ca n'a pas ete facile et ça ne l'est toujours pas mais bon je vais de l'avant sans perdre espoir. Courage