Mister Ostrich 💉💉💉 @jsuispasmalade
Patient impatient. Déni de maladie. J’essaie de vivre comme si je n’avais pas de #SEP #MS #France #Allemagne #MSRR depuis 2011 #Tecfidera depuis mars 2021 Allemagne Joined March 2021-
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#Tecfidera me cause ces derniers temps beaucoup de démangeaisons sur les bras, cou, poitrine et aussi le cuir chevelu à tel point que j’ai l’impression d’être envahi de poux (mais non, après vérification minutieuse ça n’est pas ça, j’aurais pourtant préféré). Vous avez ça aussi ?
2e infection au coronavirus, malgré le masque FFP2 que je n’ai pas quitté, malgré mes 3 vaccins (et aussi merci les vaccins de pouvoir le raconter parce que j’ai une version supportable) et après avoir eu delta en décembre 2021. Cette fois, j’ai omicron Y505H. Ça veut dire quoi ?
Fatigue, maux de dos, maux de tête. Actuellement, c’est pas la joie. Toujours pas retrouvé pleinement l’odorat depuis mon Covid-Delta de décembre. Les restrictions à répétition ne sont pas pour aider à avoir un bon moral. #Spleen ou #Depression ou #Poussée ?
Le virus d’Epstein-Barr, déclencheur probable de la sclérose en plaques – via @lemondefr lemonde.fr/sciences/artic…
Faudrait que je prenne le rendez-vous pour l’IRM de contrôle après 6 mois de traitement au #Tecfidera mais j’ai une de ces fleeeeeeemmmes… Pas le courage non plus de voir le neurologue. Envie, à nouveau, de faire l’autruche. Mister Ostrish un jour, Mister Ostrich toujours !
Actuellement, je sens surtout la fatigue. Je ne fais rien de spécial - je mène ma vie « normalement » (MS aside, of course) mais je me sens épuisé comme si j’avais fait des trucs extraordinaires et pas dormi plus d’une heure la nuit.
Migraine ophtalmique encore aujourd’hui. Aucune raison. J’en ai marre. Ça plus les « flush » dûs au tecfidera, it sucks a lot! 😖 #PutainDeMS
Migraines ophtalmiques à répétition. Alors que je suis en vacances. Donc l’argument du stress (« Il vous faut moins de stress Monsieur Ostrich ! ») tombe à l’eau. #VaComprendreCharles
Première ordonnance de Tecfidera pour 3 mois. Enfin ! Déjà que ça m’emmerde cette maladie à la con. Alors revenir toutes les deux semaines chez le neurologue pour avoir l’ordonnance d’après, ça avait des airs de double peine. D’autant que ce n’est pas toujours dispo en pharmacie.
3 mois de Tecfidera. Ça va. Pas trop à me plaindre. Mais j’ai toujours des migraines ophtalmiques en plus, sans raison, sans logique. Ça épuise. Zéro alcool et zéro chocolat pourtant. Pas zéro stress mais je ne sais pas comment arrêter ça ! #QuadratureDuCercle
#Tecfidera 1 mois et 1 jour. Dose complète à partir de demain. J’ai rallongé le 120/240mg pendant une semaine parce que ça allait trop vite pour moi. Pas mal de désagréments mais « pas si pire » que je le craignais, même si pas du tout marrant. On s’habitue à être mal. C’est nul
Vacciné au BionTech 💉 hier. Un peu mal au bras comme des courbatures mais rien de grave. Sur le front du #TecfideraWeek4, j‘en suis à 360mg/j (120 /240). Maux de ventre et flush. Rien d’insupportable mais pas non plus anodin ni agréable. Usant. +migraines ophtalmiques 3/semaine
#TecfideraWeek3 Grosse fatigue et diarrhées. Les joies simples de la vie avec la SEP sous traitement. Youhouuuuu ! (Et je fais abstraction de la situation sanitaire mondiale sinon je vais devoir ajouter « dépression » au tableau clinique).
#TexfideraWeek2 Dose augmentée à 2 x 120mg / jour. Matin et soir. Prise de sang ce matin. Rendez-vous avec le neurologue dans 5 (!!) semaines pas possible avant sauf urgence. #DémerdeToiAvecTaSEP

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