送交者: 天真 于 2006-3-27, 22:03:34:
非常感谢前面好多热心人的信息和对我们拥有的raw信息的评估
因为感觉出国来治疗不现实,而且病人还不是我直接朋友,所以一直没进一步提供更多信息,也问不出问题
其中英国一个教授的秘书回信说不巧教授休假短期不回来,我们澳大利亚的全国中心说暂时没有trial推荐到一个畅癌专科,后者热情还不高,所以目前只有西北大学那个干细胞有可能,另外你们提供的两篇文章一个日本用中药的,一个英国的双盲试验的,我们准备联系(虽然不知道怎么联系才合适)
现在又有点新情况,说进展其实基本没有
就是北京协和的医生根据我们提供的信息获得鼓舞,愿意出一份英文病历,以便利我们做朋友的做家属的进一步联系国外
还没收到这病历,所以一旦有了我可能还要麻烦各位尤其在英美的从事医学工作的,能进一步给些建议
在此之前,好心人能否解释西北大学的下列问题有什么密码可解剖么,或者说是否拣选还很严格
1. How were you referred to us?
2. Is your primary care physician/ GI physician aware that you are consulting us?
Are they willing to work with us?
3. How old are you?
4. At what age were you diagnosed with Cohn’s Disease?
5. What medications are you currently taking?
6. Have you taken Remicade?
7. Please provide a complete medication list of medications that you have tried to treat your disease but did not work for you.
8. When was you last colonoscopy and what were the findings?
9. When was your last upper GI/small bowel x-ray done? What were the findings?
10. Have you had any surgeries related to Crohn's? Anything removed?
11. To what degree is the involvement of the colon, small bowel or both?
12. Number of stools per day?
13. Rate your abdominal pain. (0 = none, 1 = mild, 2 = moderate, 3 = severe)
14. Rate your general well being. (0=well, 1=slightly under par, 2=poor, 3=very poor, 4=terrible)
15. Do you have ache, anal fissures, anal fistula abscess, fever, obstruction or oral ulcerations?
16. Do you use pain medications?
17. Do you have an abdominal mass?
18. Are you anemic?
病人目前不能说是OK,所以保守或者饮食习惯等办法恐怕不行了
因为溃疡出血很厉害,经常高烧,虽能控制,北京协和基本没辙,不知道医生自己会否查国外资料,我们查google发现报纸有则几年前的报道,说协和没确诊的此类病在云南给治好了
http://www.yn.xinhuanet.com/ynnews/2003-05/12/content_484499.htm
不管怎样,协和的医生愿意给我们开英文病历,说明他还是很负责很热心的吧,这种病本来难办
我的email是lirmau at yahoo.com.au
如果你愿意或能够为此事帮我们,哪怕只是解释一些术语,可以与我们直接联系,我们就不老来用xys的空间了
再次感谢好心的人们