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ALS진단후 자문부탁드립니다.

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작성자 윤태원 (116.♡.135.88) 작성일 10-03-22 20:57 조회 4,370회

본문

선생님 안녕하세요 . 저는 대구에서 루게릭병을 앓고 계시는 모친을 간병하는 젊은 청년입니

다.늘 여기서 많은환자분들 이야기들 참고로 많이 하고 있습니다.제가 궁금한게 있어서요. 저

희 모친께서는 루게릭진단2년정도 되셨으며 현재 다리를 못쓰시고 팔은 아주조금만움직이실

수있는정도입니다. 식사 대소변은 잘보시고요.근데 처음 병원에서 확정받고 이병이 앞으로 안

좋은 상황까지 가더라도 고통도 없고 몸이 아프지 않는다 하던데요.저희모친은 어깨 무릎등 관

절이 다 아프시고 몸특정부위부분들에 많은 가려움증이 너무 심하세요. 너무 간지러서 피가 날

지경이고 살이 피멍이 든것처럼 그렇습니다.누워계시부위는 아니고 가슴쪽 아랫배 발등 이런

곳들이 그러시네요.다리부터 증상이 오셨는데 발가락을 땅쪽으로 미는 힘은 많이 있으신데 발

가락을 위로 재끼는 힘이 전혀 없어요.이런것들 봤을때 제가 궁금한 부분 요약을 하고 자문을

얻고 싶습니다.

1.다른환자들분들도 모친처럼 가려움증이나 골절같은 아픔이 있는가요?

2.다리는 살이 많이 빠져 얇으신데 못걸으시고 못움직이셔도 저희 모친처럼 발가락이나 다리

에 힘이 많이 들어오나요?

3.잘못움직이시는 모친을 늘 안마를 해드리는데 해드릴때마다 늘 하품을 지나칠정도로 쉴새

없이 너무 많이 하십니다.또한 몸을 안마를 하면 등이나 팔다리 이 힘을주고 주물리면 지나칠

정도로 계속 트림을 하십니다. 예전에 한방병원에 계실때 하품을 연속으로 하시다가 3번정

도는 입이 안다물어지고 최대한 입을 하품크게 할때 처럼벌어져서 경련(?)같은걸 몇번이나 하

셔서 응급실 가셔도선생님들은 지켜보고 이해가 잘안가신다고 그런채로 30분동안 눈물만 흘리

면 입이 안닫혀 지신채로 계신적도 있었습니다. 이렇게 하품과 트림과, 하품할시 한번씩 입

이 안닫혀져서 경련을 일으키 실수 있나요?

4. 입안에 혀가 한번씩 말려 안쪽으로 옆으로 자기도 모르게 말려 들어가십니다. 이증상은 왜

그럴까요.?

질문은 이정도 입니다. 2년동안 지켜드리고 간병하면서 루게릭병이 이렇게 많은 부분들도 다

아프고 힘들게 하는것인가 아니면 저희모친 유별나게 이런증상이 신지 참 궁금합니다. 선생님

답변 기다리겠습니다.

바쁘신데 긴글 읽어 주셔서 감사드립니다.

이전글가래가 많이 생깁니다. 10.04.15
다음글ALS진단후 자문부탁드립니다. 10.03.23

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wq123 아이피 (221.♡.38.118) 작성일 17-04-20 10:15

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