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작성자 아무개 (121.♡.2.41) 작성일 10-05-07 18:22 조회 4,735회본문
작년 10월쯤? 그쯤에 엄마가 허리통증으로부터 시작해서 오른쪽다리가 절룩거려진다면서 대학병원에서 여러과에서 mri 피검사 등등 검사를 받았는데 이상소견x
2월중후반쯤 아주대(신경과)에서 루게릭 의심된다면서 근전도 검사를 했는데 이상소견은 보이나 증상과 수치가 다르다고 입원해서 여러가지 검사해보자했습니다.
그전에 mri 피검사 등등 엄청나게 많이했는데 이상소견없었습니다...
한방병원에 1달정도 입원해서 거기서 침맞고 목mri 찍고 했는데 이상없다고
루게릭도 아닌거같다고 했구요....
근데 저흰 다시 서울대학병원가서(현재)
검사를 했는데 루게릭이란 판정 받았습니다 ..(아직 정확히 확진된건 아니고... 검사결과아직 남았다고 하면서... 어제 다시 근전도 두갠가 더했어요..1달뒤에 오라구....)
외래진료 하시자면서요... 오늘 퇴원했구요...
릴루졸?이거 50mg 짜리 하루에 한알씩(아침만먹는걸로) 4주치 지어주시더라고요....
지금 현재는 치료제 중엔 요거밖에 없다고 일단 약써서 좋아질수도 있다고 하드라구요.... 루게릭일까요.... 너무 겁납니다...ㅠㅠ 중증 근무력증일수도있구 다초점성운동신경병증일수도 있을까요?
경과를 지켜봐야할까요?
일단 들어올리는 힘만 없서요 누워서는 되는데 일어서서는 안되세요
보조기가 있어야 걸을수있으세요... 호흡곤란이나 이런건 없으세요
손가락이랑 잘움직일수있어요... 젓가락질도 할수있구요
허벅지랑 엉덩이쪽이 많이 빠지셧어요....
장딴지쪽이랑 팔 손가락등등 마르지않았어요..
불과 2개월만에 이런판정받아버리니까 너무 복잡하네요..... 아직 확진된건 아니니까 희망은 가져봐야 알겠죠? 비슷한증상 중증근무력증이나 다촘점성운동신경병증, 다발성근염?? 이거일수도있나요?
루게릭만 아니길 정말 바랄뿐입니다..ㅠㅠ
아그리고 릴루졸먹고나서 부작용같은건 없는데 오른쪽 발(발가락 발바닥)이 움직이고 톡톡튀는현상같은게 일어납니다 떨린다고해야되나 이건왜그런건가요?
아직 최종 확진진단은 받지않았으니까 괜찮아질수도 있는걸까요??....ㅠㅠ
엄마증상은 다발성근염인거같기두 해서요....
분명히 아주대에서도 진단할때 루게릭같다고해서 침근전도를 했는데. 이상소견은 보이나 루게릭이랑은 증상과 수치가 다르다고 말씀해주셧거든요...
그리고 안마를 해줄떄 허벅지쪽 근육을 안마해주면 엄청나게 아프다고 그럽니다
관절쪽이나 이런걸 안마해줄텐 아프다고는 안하는데 이건 왜그럴까요... 자꾸 장딴지나 허벅지 근육을 안마해주면 통증이 심하다고합니다..
답변좀 부탁드릴꼐요..
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