I was just diagnosed with mg in Dec. I started on prednisone and mestinon. My double vision comes
and goes every 4-6 days. I was wondering after on the meds will the double vision stay way for longer periods of time?

Last Edited: by SueC on 2005-01-18 08:07:30.72

［此帖子已被 海蓝港湾 在 2005-11-10 7:56:34 编辑过］

我在十一月被诊断为MG。然后开始服用小名和小强。我每4-6天就会出现复视。我想知道是不是在以后很长的一段时间内在中午以后都会复视

徒儿啊，真给我丢脸

我在十二月份被确诊为MG，开始服用小明和小强，我每隔4—6天会出现复视。我想知道是否在用药过后，没有复视的时间可以持续长一些？

还是师傅水平高，呵呵。下一帖：

Sue

MG is so variable and inidvidual that it is impossible to give an answer to your question. You might have no symptoms for a long time, and then suddenly have a recurrence of the double vision.
----------
Peter Finney
MGA Chairman

苏：

MG这种病有很大的变数和个体差异，所以不可能对你的问题给出一个明确的答案。你可能在很长一段时间内没有复视症状，但是突然的又复发了，这很难确定。

——彼得.芬尼

（美国MG组织主席？）

佩服楼上的，你是英语专业的吗？

I was diagnosed just last year and of course it took over a year to really pin poiunt the disease. They are tryinfg different medications like the mestinon and now cell cept ia addition to, I'm also on a form of chemo for my RA. I feel I'm on so much mediation that I really don't know what is working and what is not. Any ideas or suggestions?

Thanks- Susan

老大，我也得开着词霸嘿。这越来越难呐。有的词儿就像咱们上网故意打错别字似的

我是去年被确诊的，当然这是一年以后病情明显了才被确诊的。他们试图用了很多种药物，像小明啊，现在又增加了山喜多（免疫抑制剂）。我还检验了是否有风湿病的血清。我不知道我用的这些药哪一种在起作用，哪一种不起作用。有没有什么主意和建议呢？

谢谢——苏三

［此帖子已被 滑翔翼 在 2005-11-13 20:36:32 编辑过］

报告老大不是英语专业的，over

cell cept 音译为“山喜多”，是一种新的免疫抑制剂。麻烦小翼修改一下翻译结果。

台湾翻译为山喜多，大陆翻译为骁息

［此帖子已被 海蓝港湾 在 2005-11-16 10:03:07 编辑过］

The problem with the Prednisolone is that it takes a little while to work. A couple of years ago, I was having so many problems because of my inability to focus that it was affecting my work (I'm a legal secretary). My consultant finally put me on Prednisolone, increasing 5mg every week. It took me to 50mg to get my normal eyesight back (together with the Mestinon as well).

When I have previously had problems with Myasthenia (having been tentatively diagnosed when I was 15 and now being 34), very often the Mestinon doesn't seem to help a great deal. My symptoms have primarily been not drooping eyelids, but rather the lack of ability to focus, with no eyelid problems to be seen. When it is like this, very often I find it helpful to make sure I am not squinting at any point.

One of the most useful pieces of information I was given was by a nurse when I was leaving hospital on the one occasion that I had to be hospitalised due to a crisis. She told me to make sure that I wear my sunglasses in the sun. Very often I have found my symptoms to flare up in the summer and I am convinced this is because the eye muscles are being used to squint against the sun. It does help to make sure the eyes are not under any strain, so when I am having problems, reading is definitely off the menu, so that the muscles are relaxed. I have to say my eyes are more sensitive to light and wind for instance then previously.

I'm not a fan of Mestinon myself but I know there are times that I have to take it. The side effects are never pleasant, and when you have had cramps from taking Mestinon on an empty stomach, you don't do it again! Very often I find the Mestinon causes spasming of the muscles of the eyelid.

Hope this makes sense!

小强的问题是它需要过一段时间才能发挥作用。几年以前，因为肌无力我遇到了很多问题，工作的时候我无法将视力集中（我是一名律师）。最后，我的医学顾问给我用了小强，每周递增5mg，一直到50mg剂量的时候，我才恢复了正常视力（同时还在服用小明）

当我最初出现肌无力症状的时候（15岁时的治疗性诊断一直到现在34岁），小明常常起不了太大的作用，我最初的症状并不是眼睑下垂，而是视力不集中，看不出眼睑的问题。而在这样的时候，确定看任何东西没有斜视是很有帮助的。

在我因为出现危相住院的时候，我从一位护士那儿得到了一个非常有用的信息。她告诉我一定要在阳光强烈的时候戴墨镜。我发现夏天的时候我会突然出现复发，而且我确信这是由于眼肌为了对抗阳光会而出现习惯性斜视的缘故。一定不要让眼睛过于劳累，所以当我出现问题时，干脆就不在页面上阅读，这样肌肉就放松了。不得不说，我的眼睛对阳光啊风啊比从前更敏感。

我并不是一个小明的爱好者，但是我知道有时我不得不服用它。药物的副作用是不乐观的，如果你在空腹服用小明的时候感到痉挛，那么不要再那么做了！我常常觉得小明会导致眼肌的痉挛。

希望这可以对你有些意义。

［此帖子已被 滑翔翼 在 2005-11-16 16:52:15 编辑过］

［此帖子已被 海蓝港湾 在 2005-11-16 20:11:38 编辑过］

I started having double vision in late Feb. I was officially diagnosed with MG on Mar. 21. I

我在去年2月出现持续的复视，今年3月21日确诊为MG。

started on mestonin a week later. I started with 60mg/day, and am up to 120mg/day. My eyes

一周前我开始服用小明，开始的时候每天60mg,现在增加到每天120mg。

keep getting worse. It feels like they are looking off in different directions, but my wife says

我的眼睛一直没有起色。感觉是两只眼睛分家了，各看各的方向。但是我妻子说其实

they look like they are looking in the same direction.

我眼睛看上去是一顺顺。（我晕，小滑救我，最后这一句我可是没有看懂。）

as already stated by the chairman its very individual ... i had vast improvements from the prednisolone and mestinon now on azathioprine and that appears to work well with less side affects.

I WENT TO THE OPTICIAN (YEP SOUNDS WEIRD FOR MG I KNOW) BUT THEY CAN GIVE YOU GLASSES WITH PRISMS WHICH RESTRICTS THE AMOUNT OF WORK NEEDED BY THE MUSCLES IN UR EYES AN HAS DEFINITELY IMPROVED MY VISION) CHECK IT OUT

tc xx

I have just been diagnosed as having occular MG with the Tensilon test and been given Mestinon.

I agree with Peter that everyone's symptoms sound to be different. My first double vision lasted 4 months in 1994, then 3 weeks in 2003 and currently since May 19th this year. Really strange, but in between my eye muscles and sight were perfect - so there is hope!!

I was told to take 4 x 60 mg tablets of Mestinon daily, which gives me 2 hours of single vision when I first wake up, then back to double vision all day. I also find, like Nicksu, both my eyes twitch like mad when it starts to work. Renaldo’s dosage sounds really low, it’s worth going back to your doctor. I spoke to my neurologist today and he explained that Mestinon does not have an accumulative effect and as each tablet will only work for 3 – 4 hours, I could take up to 5 a day and take them up to 7 or 8 pm, depending when I go to bed because there is no point in taking it before I go to bed. So I am experimenting today taking tablets at only 3 hourly intervals (5 altogether in one day’s span) and I am getting more relief but it's not great. (Fortunately my digestive system is tough enough to take it!) However, I would rather persevere with Mestinon than go on steroids and just hope my eyes right themselves as they have done before.

Thanks Nicksu for the advice on sunglasses. I have ordered prescription glasses that wrap around so that I can tape down one eye behind – this is so that using one eye won’t be as noticeable as the black patch I have made to fit over one lens of my ordinary glasses. It does get a bit boring having to do my Captain Hook impression and explain what I’ve done to my eye to everyone I meet (must find a parrot to put on my shoulder) I have also made different coloured patches with sequins sewn on to match my outfit when I go out – you never know, it might catch on as a fashion statement!

It’s a hugh relief to finally know what is causing my double vision and I am humbled by all the people posted on this website with so much more to contend with than me, but I am going to apply a good dose of positive thinking (and plenty of sleep) to a very scary diagnosis. Thank you all for your advice and sorry I’ve gone on a bit, it’s nice to know I’m not alone.

JennyB

Last Edited: by JennyB on 2005-07-18 14:40:50.26

keep getting worse. It feels like they are looking off in different directions, but my wife says

我的眼睛一直没有起色。感觉是两只眼睛分家了，各看各的方向。但是我妻子说其实

they look like they are looking in the same direction.

我眼睛看上去还是一个方向的。

P.S老大，别叫我小滑，好像没消化似的

就像会长所说的那样有很大的个体差异，我服用小强和小明后得到了很大的进步，现在正在服用azathioprine（免疫抑制剂），它作用发挥得很好，副作用小。

我去了眼镜商那里（当然，对他们来说MG是件不可思议的事儿），但是他们可以给你提供帮助眼肌工作所需要的镜片，我的视力的确因此而改善，你不妨试试。

tc xx

[译者注]ur ==your  网络缩语

硫唑嘌呤

Azathioprine(Imuran)

别名：义美仁、巯唑嘌呤、依木兰、咪唑巯嘌呤、AZP

【作用与用途】

本品为细胞代谢抑制剂，是巯嘌呤的衍生物，在体内转变为巯嘌呤而发挥抗肿瘤作用。本品也是一种免疫抑制剂。临床用于急性白血病、自身免疫性疾病等。现主要用于器官移植时抑制免疫排斥。

【剂量与用法】

口服，每日3(2～5)mg/kg，依疗效与血象决定疗程。用于器官移植，每日2mg～5mg/kg，维持量每日0.5mg～3mg/kg。

1与巯嘌呤相似而毒性稍轻，可致骨髓抑制、肝功能损害、畸胎，亦可发生皮疹，偶见肌肉萎缩。

2肝功能不良患者及孕妇忌用。

［此帖子已被 海蓝港湾 在 2005-11-17 13:54:45 编辑过］