Ritka betegség

Üdv Mindenkinek, aki olvasásra szánta magát!

 

2005 nyarán, egy hónapi gyötrelem, altatás, epilepsziás rohamok után diagnosztizálták nálam a Hashimoto encephalopathia nevű betegséget, amit valószínűleg az autoimmun pajzsmirigyem váltott ki.

 

Amit a betegségről tudni lehet:

 

Magas antithyroid antitest titer jellemzi az akut-szubakut indulású, remissziókkal és relapszusokkal jellemezhető, súlyos, életveszélyes, de szteroidra jól reagáló, autoimmun, ritkán előforduló Hashimoto-encephalopathiát.
Az interneten konkrétan ennyi található. Gyakran hozzák összefüggésbe az autoimmun pajzsmiriggyel, amivel én is küzdök, de önmagában ezt a diagnózist kevésszer elemzik. A lényege egyébként az, h ami a pajzsmirigyben végbemegy, önmagát pusztító sejtek, az az agyban is elkezdődik...ha időben nem veszik észre, akkor végbe is megy. Nálam 1 hónapot vacilláltak az orvosok, több kórházban is voltam, de egyik sem akart átvenni, mert nem voltam még elég jól, így maradt az intenzív osztály. Aztán, amikor már elég Medrolt szedtem és eljutottak odáig, h nem szabad drasztikusan csökkenteni, akkor már az OPNI-ba kerültem. Okokat mindmáig nem tudok, ha rákérdezek a kezelőorvosaimnál, h miért van ez így és miért alakult ki vagy miért változik havonta a pajzsmirigyműködésem alulműködőből túlműködőre, akkor a válasz: passz!
Három éve vagyok leszázalékolt, mivel a hivatásom nem engedi meg az ilyenfajta betegségeket. Óvónő voltam. Három éve a szüleim tartanak el és abból a kis nyugdíjból élek Budapesten, mert itt érzem magam biztonságban...hiszem, hogyha engem a bajom vidéken, a falumban ér, akkor már nem pötyögök itt nektek. Áldom a szüleimet, h lehetővé teszik nekem a gyógyulásomat teljes nyugalomban és biztonságban, de az izgatottságom a miértekből ered, h nem kapok válaszokat. Szeretnék gyerekeket, családot, 28 éves vagyok, de a gyógyszerek mellett nem engedhetem meg, h ártsak a babámnak. Szóval elég nehéz ez így, mert nem is az energiám, hanem a belső erőm fogy. Úgy érzem,h eddig tüzet oltottak, most már nem tudnak mit tenni, javasolták a pajzsmirigy műtét,amit el szeretnék kerülni. 3 éve mindent megteszek azért, h a szervezetem úgy működjön, ahogyan kell, de azt érzem, h ellenem fordul és nem szolgál engem. Lehet, h a műtét mellett kellene döntenem, de gyógyszer akkor is maradna és az csak a pajzsmirigy ingadozásomat oldaná meg...a fejben levő problémák még ott vannak....
Szeretnék találni valakit, aki hasonló vagy ezzel a betegséggel küzd...tudni szeretném, h hogyan oldja meg, kihez jár, miként éli meg. Aki tud nekem segíteni, az tegye meg nekem, h összehoz minket! Bár én még nem hallottam senkiről, pedig kutatok, elhihetitek!
Mindig mondtam a szüleimnek, h könyvet fognak rólam írni...hát, hívott a neuropszichológus, akihez jártam, h szeretne rólam, az érzelmeimről, a betegségtörténetemről egy összefoglalót írni. Jövőhét szerdán megyek hozzá beszélgetésre....majd megírom hol jelenik meg a történetem:p
Azt hiszem első körben egyenlőre ennyi elég....
Jelentkezem még!

 

Ha valakinek van kérdése vagy hozzáfűznivalója, akkor az email címem: szerimhiki@freemail.hu

 

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