我也是被诊断为患有眼肌型MG。我是通过腾喜龙试验确诊的，然后开始服用小明。

我同意彼得所说的，每个人的症状都是不同的，我第一次出现复视是在1994年，大约持续了4个月；2003年时出现了3个星期；从今年的5月19号到现在又出现了。相当的奇怪。而在这之间我的眼肌和视力都非常的好，所以我非常期待这样的时候。

医生让我每天服用4粒60mg的小明，这样我每天起床的时候能够维持2小时的正常视力，之后的一整天都在复视。我还发现，想Nicksu所说的，在药量发挥作用的时候我的两只眼睛会很严重的抽搐。Renaldo的用量听上去的确是少了些，你最好回去问问你的医生。我今天与我的主治医生谈话，他解释说，小明的药力并没有累积效果，而每一片都只能发挥3—4小时。我可以每天服用5粒，一直持续到晚7点或8点，这取决于我什么时候睡觉，因为在睡觉之前的时间并不是确定的。我今天做了一个试验，每3小时吃一次（一天共吃5粒）这样我感觉症状轻了一些，但也并不是最好的（很幸运的是我的强壮的肠胃还能够负荷得住他们），无论如何，我还是愿意坚持用小明而不是一些类固醇类药物，而且希望我的眼睛能够恢复正常，像以前一样。

谢谢Nicksu对于太阳镜的建议。我已经买了一副专用眼镜，它可以卷绕，这样我就可以将一只眼睛闭上，而且使得用一只眼睛看东西不像我以前用黑镜片镶在普通眼镜里那么显而易见。只是有些麻烦的是我不得不对我遇见的所有人解释我为什么是一副霍克船长的样子（真是应该找一个相同的人陪着我）。我还制作了很多不同颜色的镜片，使它能够配合我出去时所穿的衣服，你不知道，这很有可能引领潮流呢。

当我最后得知是什么导致了我的复视时，而在这个帖子中回复的所有人比我有更多的症状要对付，这对我来说也许是种安慰。但是对于这样一个可怕的诊断，我还是要用积极的态度（和充足的休息）去用药 。谢谢你们所有人的建议，抱歉我说得太多。我是多么高兴的知道，其实我并不孤独。

珍妮.B

 ［此帖子已被 滑翔翼 在 2005-11-17 12:08:56 编辑过］

［此帖子已被 海蓝港湾 在 2005-11-17 14:45:35 编辑过］

saralou 12 posts 18-Jul-05 3:23 PM

Hi all my double vison is strange and comes in fortnight periods so I have two weeks of double from morning to night and two weeks clear (Think it something to do with change of hormones due to menstrual cycle. I take 90mg mestinon x 4 daily and 100mg predisilone every other day - as stated in other messages the aysothaprine (spelt very wrongly I know) has made my liver poorly. I like others of you found wearing sunglasses helpful (my eyes are really sensitive to light) and have 3 differnet strength and direction prisms that I can interchange. I can also put them on my sunglasses. (this is brilliant as being some one who has has never worn glasses people were always asking why I had them on - now in the summer I don't have to explain.) I find patching one eye really helpful if I am particualry tired (and not that I fancy it at all but it's legal to drive like this providing you have good neck movement (Pease always ask your consultants advice). The double vison is the thing I have found most stressful about MG (I have had a recent crisis) but when I have double vision is so upsetting. I have pictures taken at my 30th birthday and my eyes are all over the place. I get a "funny feeling" before I start my double vison which is very disorientating and then the same feeling when it goes. My opthamologist has told me that I can get glasses with the prism built in (it will be clear glass with no lines) but in all fairness she has advised my not to spend the money until they can control it a bit more. I do however get extra points if we play pool (a mission in it's self if my neck is bad as I have to sit down to shot!) because I see so many balls so I get extra points to start with - Like golf I think! I also get panicky in crowds and have to remind myself that there is not as many people there as I think/see! Does any one else get eye infections? I seems very prone to them since diagnosis? I also now understand why my partner was very concenred in the morning becasue I had lay awake all night! - I was actually asleep with my eyes open!! proper horror film stuff I think. take care and I hope everyone stabalises soon. Sara

嗨大家好

我的复视很奇怪并且以两星期为周期，也就是说我有两星期从早晨到夜晚都复视，接着的两星期则是清楚的。我想是由于月经周期内分泌的变化在起作用。我每日服用4片90mg的小明，并且每隔一日吃100mg的小强。和大家所陈述的类似，aysothaprine（依木兰）(拼写非常错误，我知道) 已经使我的肝非常的不舒服。

很高兴大家发现戴太阳眼镜有帮助(我的眼睛真的是对光线敏感到家了)，我有3副度数和屈光不同的镜片换着用。 我也能把他们加在我的太阳眼镜上。这是个杰作，因为从不戴眼睛的人现在戴了，人家老是问你为什么。现在在夏天我就不用解释了。我发现如果特别累的时候罩住一只眼睛确实管用（这个地方不会翻译，英国人说话太随便，wo yun）。做做颈部运动是个好建议 (注意咨询你的顾问)。

我早就发现MG患者的复视和压力大有关 (我最近有过一次危象)

 

 

有没有其他人得了眼睛感染？自从诊断以来我的状况很像得了眼睛感染。我现在也终于明白为 什么我的同事在早晨的时候那么关心我，因为我整个晚上都是睁着眼睛睡觉，如同醒着一样。我觉得就像恐怖电影里面的眼睛一样。
保重，我希望每个人都能尽快恢复健康

［此帖子已被 海蓝港湾 在 2005-11-21 15:31:09 编辑过］

I am a chinese.I was just diagnosed with mg last year.
Everday I am looking for information about MG in internet.

A few days ago, I was very happy that I discovered this website.Because in the global village we are no longer standing alone.Although we come from the different nation, the disease let us contact together.I hope to know more friends here, sharing more treatment experiences.Thank everyone.

Let's have a world without "MG"!

Welcome BlueHarbour, I too am very interested in alternative treatments for MG than drugs. I have been seeing a homeopath and will persevere with his treatment but have not seen any dramatic improvements so far. I have double vision and if my sight doesn't improve with homeopathy, I will certainly go to a Chinese herbalist. My husband went to one with a skin condition on his hands which was cured. It took a few months and involved acupuncture and some foul smelling soups but it seemed to do the trick.

You say you have not taken any medicine. Have you only had acupuncture or have you taken any herbal supplements too?

Cheers,
JenB

哇塞，老大，你打入英伦MG组织内部啦

厉害~~~~ 佩服~~~~~

欢迎海蓝港湾，我对于mg的替代药物疗法也有很大的兴趣。我一直在需要替代疗法的医师，并且也很乐意坚持这用疗法。但是到现在为止我还没有看到这方法有有什么特明显的效果。我有复视的症状，如果我的这个症状不能够用替代疗法缓解，我肯定会去看看中医师。我丈夫手部皮肤不适，他在中医师那里就治好了。这花了几个月的时间，并且使用针灸和非常难闻的汤药，不过最终获得了成功。

你说你没有使用任何药物。你用过针灸或者草药补品吗？

 

祝贺

JenB

我真是佩服你们啊，厉害，

they look like they are looking in the same direction.

翻译：我的眼睛看上去就像是往同一个方向看

这个 坚持翻译一段时间 以后能翻译mg英语文献啦

今天才看到，老大是高手，滑翔翼也是高手！为了我们这个家，你们大家都辛苦了!不过看了这篇国外的论坛讨论后，让我们更清醒地认识到，我们这病还真没捷径！只有与药相伴一生了。期待有新药诞生，弥补这块空白！