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작성자 주인수 (180.♡.109.250) 작성일 10-05-16 21:29    조회 6,062회

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루게릭병의 시기에 따라 진단의 정확도가 많이 달라집니다. 초기에는 아무래도 증상이 미약하기 때문에 오진할 가능성도 많고 또 유사한 증상을 보이는 다른 많은 질환들도 감별해야 합니다. 그러나 병이 어느 정도 진행하면 특징적 증상과 경과를 보이므로 비교적 진단이 용이합니다.
이러한 병의 특성을 고려한다면, 한가지 검사 소견만으로 루게릭병을 진단내릴 수 없고 환자의 임상경과 및 증상 등도 반드시 고려되어야 합니다.

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>
> 선생님 여쭤볼게있습니다
> 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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헬프미님의 댓글

헬프미 아이피 (24.♡.223.115) 작성일

저희남편도 4개월전 루게릭판정을 받았었습니다...
설마설마 했는데 막상의사가 루게릭이 확실한것같다고 했을땐 눈앞이 깜깜했죠...
그래서 저희남편도 리루졸 과 리튬(같이 복용하면 효과가 더 좋다고 하네요)을 처방받고 3개월정도 복용했습니다..
그리고 마지막으로 지푸라기라도 잡는심정으로 다른의사한테 한번더 검사를 받아보기로 했습니다.. 그결과 루게릭이 아니라는 진단을 받았어요..
루게릭이 아니고 근육병(진행성 근이양증)이라고 하네요...
이병도 루게릭만큼 고치기 힘든병이지만,루게릭보다는 병의속도가 느리게 진행된다니..그나마 다행이라는 마음으로 살아가고 있습니다..
아참, 근데 저희남편은 리루졸복용때문에 간이 많이 안좋아졌어요..ㅠ.ㅠ

아무개님의 댓글의 댓글

아무개 아이피 (121.♡.2.41) 작성일

죄송한데요... 어디병원가셧어요??
저흰 아주대 서울대병원 갔었거든요.
아주대에서는 3월초에 의사선생님께서 루게릭같다고했는데
검사상 근전도상으론 이상은있는데 또 루게릭이랑은 다르다고하셧거든요...
또 5월초쯤에 서울대에서 여러기자 검사를했는데 루게릭같다고만 하셧거든요(아직검사결과 남았다고하시면서)....
근전도 신경전도 뇌척수검사 피검사 소변검사 (근육생검은안했습니다)
저도아직 확진내려진게아니라서요
너무무섭고 힘듭니다..ㅠㅠ 병원좀알려주세요... 어느분은 연세세브란스 가보라고 그러더라구요..

wq123님의 댓글

wq123 아이피 (221.♡.38.118) 작성일

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