[求助]有没有MUSK抗体是阳性的朋友，我妈妈也是，想得到你们的帮助。

关于日常生活，普通治疗和危象治疗的经验，谢谢你们了。

数小时前,我在另一个关爱会发了信,目前只收到2封,因为大家的不了解,无能为力,但他们都在为你妈妈祈祷.我把贴在下面因为这是他们发给你的.希望能增加你们的信心.也期待更多的回复.

My heart goes out to his mother. I’m so sorry..... I’m unable to help with this side of MG but wish for the best for her...

(((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))

Sandy

so sad – I’m not up on MuSK positive but my thoughts and prayers are with her!!!!

((((((((((((((((((((((((hugs))))))))))))))))))))))))))

我找了FACEBOOK, 找到一个相同的患友,他每三个月做一次抗体检查,检测疾病的好转或加重,调节治疗. 他估计整个美国有大约300人,加拿大约法20人.国内更多,我想一定有不少人能帮到你妈妈,

下面是两个患者的回复,可以看出每个人的对药物的反应不一样. 如果你需要更多, 告诉我,我会复制给你.

From what I understand is that studies suggest MuSK positive MG tends to be more aggressive; unfortunately there is not enough research to say which if any treatments work better. I've been told that plasmapherisis is better than IVIG with an exacerbation. I've also been told that out of imuran and cellcept, cellcept seems to work better with MuSK patients.

研究表明MuSK阳性的更重.不幸的是没有足够的研究说哪种治疗方法更好.我被告知对于MUSK阳性的病人来说,当病情加剧时,血浆置换比丙球更有效. 治疗时骁悉比依木兰作用更好.

That just goes to show how different we all are! I do better with IVIG...I stay more consistant with a 2 day dose every 8 weeks, and mainitain better on Imuran than cellcept. I have just heard that MuSK pos. MG tends to be harder to control.

我们是多么的不同,我每8周用两天丙球,丙球对我来说更好, 依木兰比骁悉作用更好. 这型MG似乎更难控制.

收到另外一个回复,仅供参考,这型相对难治,希望你妈妈能度过难关.国内的经验和治疗方法更实用.毕竟血浆置换太贵,请医生及大家帮忙.

我的神经科医生用抗MUSK这个术语,我就是,而且非常难治疗.2011年1月诊断,同年入院6次,丙球对我来说没效果,6个月前做了胸腺手术,胸腺没问题,手术至今还没有见效,但是我曾每十天做一次血浆置换,非常有效.我没有复视,没有眼睑下垂及面部问题. 我的呼吸,说话,吞咽都比以前好,四肢较前有力,我仍然是活动15分钟后就会感觉乏力,目前小明每4小时1颗, 40毫克小强,1000骁悉, 我不能再做血浆置换了,所以就只有调整药物了.如你有什么问题的话,我会知无不言,言无不尽. 我赞同血浆置换的疗法.

Hi! My neuro uses the term "Anti-Musk", which I am and I am incredibly hard to treat. I was diagnosed in Jan. 2011 and was in the hospital 6 times during 2011. IVIG did not work for me. I had my thymus removed 6 months ago. There was nothing wrong with it and so far it has not made any improvements. However, I was getting plasmapheresis every 10 days and that was working pretty good. I had single vision, no droopy eyelids or face, my breathing, speech, and swallowing was better. Arm and leg strength were better. I could still only do about 15 minutes of activity before I was fatigued. I take 60mg of Mestinon every 4hrs, 40mg of prednisone, and 1000 of cell-cept. I can no longer do plasmapheresis so we are adjusting meds. I hope that helps. I open to answering questions if you have anymore. I would go with the plasmapheresis for treatment.

谢谢你提供的这些，我妈妈这三天恢复的不错，医生已经开始尝试脱机了，不过是不是能脱掉，还不好说。只求快点脱离危象，你提供的这些为我日后照顾我妈妈是个借鉴，谢谢你。如果有有用的内容，还请你告诉我。再三谢谢你。