Rita 52 post s 17-Oct-2007 4:59 AM	Has anyone tried putting an ice cube on their eyes when they refuse to open and then found they will open? sounds daft but would be interested to know if it works
LynseyH 161 post s 17-Oct-2007 5:01 AM	I haven't tried but have heard it does work. ---------- 21yrs old female South Bucks
JohnnyG 233 post s 17-Oct-2007 12:01 PM	Before I went on the steroids, and while I was suffering from ptosis and double vision I had this gel filled eye mask that you could cool in the fridge. Applying that for a few minutes would make a noticeable improvement, so yes it does work. Unfortunately, it only works for a few minutes. ---------- Kildare, Ireland
Keith8120 36 post s 17-Oct-2007 12:45 PM	Variation on a theme! My eyelids often droop when I have a hot shower, but if I turn the taps to cold and play the cold water on my face (shock to the system) my eyes open wide enough to find the shower door and get out quick. They only stay open long enough to wrap myself in a warm towel. Now there is a new game you can experiment with in the bathroom! Keith.
LZOLI 47 post s 18-Oct-2007 6:43 AM	Hi, My experience was same : cold water, and the iced things to eyes, I did these. But now the sporting and training have same effect, because sometimes I have a little ptosys. About after 40 minutes running (cca. 10 kilometres) ptosys is "fly away". Hmmm... oxigen defficiency(?!), and lymphatic dullness (?!) But I have been 6 years without saccharose&milk. Good health for everybody! LZOLI Hungarian MG Group. Budapest
JohnnyG 235 post s 18-Oct-2007 12:30 PM	Hi Lzoli, That is really interesting that prolonged running relieves your ptosis. I'm wondering if the muscles working hard like that lowers the level of AChE (the chemical that breaks down AChR) in the body. If so, then the running would be like natural mestinon. (I know nothing about how/where the AChE is created, so this idea may well be complete nonesense). John ---------- Kildare, Ireland
LZOLI 48 post s 19-Oct-2007 9:17 AM	Hi, That was too interesting for me, but I discovered ptosys@running connection in this year. But when I had been in mg the 10 minutes walk&dancing were terrible for me (all mg symptoms!) I had been thinking about oxigen defficiency, I was long distance runner before my mg in 1990. I think I did a lot of wrong things appr the high dose of saccharose might destroyed the fine balance of oxigen/sugar field of bload and body. Now I feel a little bit mg promblems when i drink/eat alcohol and saccharose (feel dizzy, fatigue, ptosys and yawns). And before mg in 1990 had suffered fossilized muscle bounds (<=>aciditic dissimilation in time O2 defficiency). But I have little eye- mg problems, but it is necrotic problem after 11 years illness. Everythings are regenerated. This is the key of my mg I think.Nowadays is the main: follow with attention these. If the body dont get enough oxigen in everywhere may problems in assimilation, regeneration. And the psyche problems are also important in right psycho-neuro-immun modullation connections. And find the researchers another ways for for help in improving. Take care! Last Edited on 19-Oct-2007 9:25 AM
T 74 post s 19-Oct-2007 10:02 AM	Interesting for sure! Thanks for posting on this and the running. I just recently rejoined the gym and started doing power yoga (more cardio as you move quickly through the poses) and my eye has been better during this time. Still definite connection to that "time of the month" for me as a female though, and to high stress levels so I'm sure this is also all related to hormones (and excercise also reduces stress hormones). ---------- All the best - T USA
LZOLI 49 post s 20-Oct-2007 9:25 AM	Yoga knows "something" about respiration&relaxing&calm. I tried and drunk 100 gram milk in pancake and now come little ptosys ;)and headache. Avoid from milk! Bad effect can negligate with boiled millet. It is no stress for me.
rachel73 8 post s 21-Oct-2007 5:33 AM	Hi I read your comments with interest. The ice cube test was first written about in the british medical journal in 2000 as a definative test for Myasthenia when it affects the eyes. It is publicised on another MG website which my mother found which was how I diagnosed the fact I had MG. I actually took ice cubes in with me when I went to the doctors. I applied the ice for around 10 seconds and then my eye stayed open for around two minutes. No body really knows why it works. I am just glad it did, as for 8 months I went around with one eye shut and Doctors telling me I had bells palsy. After the doctrs appointment with the ice! I was put on neostigmine bromide and within 20 minutes of taking the first tablet I could see! So you aren't crazy!
Rita 55 post s 8-Nov-2007 8:31 AM	thank you all for your input

欢迎并期待英语高手帮忙

Has anyone tried putting an ice cube on their eyes when they refuse to open and then found they will open? sounds daft but would be interested to know if it works

译：当眼睛睁不开时，有人试过将冰块敷在眼睛上而使它们睁开吗？像是胡闹，不过可以知道这样是否有效。

I haven't tried but have heard it does work.

译：我没试过但是听说有效。

Before I went on the steroids, and while I was suffering from ptosis and double vision I had this gel filled eye mask that you could cool in the fridge. Applying that for a few minutes would make a noticeable improvement, so yes it does work.

Unfortunately, it only works for a few minutes.

译：我用类固醇以前，眼皮下垂和复视时我用这种放在冰箱里冷藏过的装有gel的眼罩，用一会儿就有明显的缓解。所以它是有效的。

很遗憾它只能维持一会儿。

（有几个单词拿不准，暂时这样）

Variation on a theme!
My eyelids often droop when I have a hot shower, but if I turn the taps to cold and play the cold water on my face (shock to the system) my eyes open wide enough to find the shower door and get out quick. They only stay open long enough to wrap myself in a warm towel.
Now there is a new game you can experiment with in the bathroom!

再举个例子来讨论下吧！

在洗热水澡的时候，我的眼睑老是下垂，但是当我把水龙头拧到冷的那边然后把冷水泼到脸上的时候（刺激系统）我的眼睛立刻睁的大大的，为了快点找到浴室的门逃离出去。但是仅仅维持到我用热毛巾把自己身体擦干。

现在你们也可以在浴室里做个相同的实验。

Hi, My experience was same : cold water, and the iced things to eyes, I did these. But now the sporting and training have same effect, because sometimes I have a little ptosys. About after 40 minutes running (cca. 10 kilometres) ptosys is "fly away".

Hmmm... oxigen defficiency(?!), and lymphatic dullness (?!) But I have been 6 years without saccharose&milk.

Good health for everybody!

你好，我的经历也是一样的：冷水，冰的东西对眼睛的刺激，我也做过。但是现在我发现运动和训练对病情也有些影响，因为有时我只是有一点点下垂的时候，一般跑步40分钟后症状就完全消失了。

恩。。。氧气浓度变化？或者淋巴腺迟钝的影响？但是我已经6年没吃糖和牛奶了。

希望每个人都健康！

sairicai  &  六月   你们辛苦了。昨天晚上我找一个留学回来的整了半天也没有你们整的好。

That is really interesting that prolonged running relieves your ptosis.

I'm wondering if the muscles working hard like that lowers the level of AChE (the chemical that breaks down AChR) in the body. If so, then the running would be like natural mestinon.

(I know nothing about how/where the AChE is created, so this idea may well be complete nonesense).

长时间的跑步能减轻下垂症状的确令人非常感兴趣。

我猜想当肌肉疲劳时，会降低AChE的水平（这种化合物分解AChR）。如果这是真实的话，跑步的作用就相当于天然的吡啶斯的明。

（我对AChE的如何产生毫无了解，因此我的以上猜想很可能是完全没有意义的。）

That was too interesting for me, but I discovered ptosys@running connection in this year. But when I had been in mg the 10 minutes walk&dancing were terrible for me (all mg symptoms!)

这太有趣了，今年我发现了下垂和跑步的关系。但是在我患MG时，10分钟的走路和跳舞对我来说是可怕的事情（所有MG的症状都来了）！

I had been thinking about oxigen defficiency, I was long distance runner before my mg in 1990. I think I did a lot of wrong things appr the high dose of saccharose might destroyed the fine balance of oxigen/sugar field of bload and body.

我曾猜想过有关氧气的差别的联系，在我1990年得MG前，我是个长跑者。我想我曾经做过很多愚蠢的事如吸入大量的糖份，破坏了身体和血液中的氧气/糖份的平衡。
Now I feel a little bit mg promblems when i drink/eat alcohol and saccharose (feel dizzy, fatigue, ptosys and yawns).

现在当我喝酒和服用糖份时，我感到MG症状的出现（感觉晕眩、疲劳、下垂和打哈欠）。

And before mg in 1990 had suffered fossilized muscle bounds (<=>aciditic dissimilation in time O2 defficiency).

在1990MG前，我曾有fossilized muscle bounds (<=>aciditic dissimilation in time O2 defficiency)的现象。（实在不知道如何译）

But I have little eye- mg problems, but it is necrotic problem after 11 years illness. Everythings are regenerated.

但我有眼部MG现象，而这是在11年的病症后的坏死问题。现在所有都好转了（再生？？）

This is the key of my mg I think.Nowadays is the main: follow with attention these.

这句有点怪，意思是：“这是我的MG的关键，请注意以下。”
If the body dont get enough oxigen in everywhere may problems in assimilation, regeneration.

如果人体不能得到足够的氧气，消化和再生的问题就会出现。

And the psyche problems are also important in right psycho-neuro-immun modullation connections.

而精神方面对精神-神经-免疫之间关联的影响也是重要的。

And find the researchers another ways for for help in improving.

这可能为研究人员提供一个新的方向。（这位的语言太过口语化了，不易翻译。）

Interesting for sure! Thanks for posting on this and the running. I just recently rejoined the gym and started doing power yoga (more cardio as you move quickly through the poses) and my eye has been better during this time.

肯定很有趣！谢谢把这个贴出来。最近我重回健身房并开始练强力瑜伽（当你在不同姿势间快速移动时，心脏的活动增加），我的眼睛感觉比以前好了。

Still definite connection to that "time of the month" for me as a female though, and to high stress levels so I'm sure this is also all related to hormones (and excercise also reduces stress hormones).

作为女性，每月的月经与荷尔蒙的关系，和精神压力的水平与荷尔蒙的关系都是相关联的。

Yoga knows "something" about respiration&relaxing&calm.

瑜伽似乎对呼吸、放松和冷静有作用。

I tried and drunk 100 gram milk in pancake and now come little ptosys ;)and headache. Avoid from milk! Bad effect can negligate with boiled millet. It is no stress for me.

我尝试过食用馅饼和100克牛奶，就会有点下垂和头痛。别喝牛奶！煮小米的坏作用可以忽视（没有negligate这个词，可能是打错了，negligible）。我没有精神压力的问题。

I read your comments with interest. The ice cube test was first written about in the british medical journal in 2000 as a definative test for Myasthenia when it affects the eyes.

读你们帖子很有趣。冰块测试是在2000年一个英国医学杂志作为MG眼部症状的确认试验首先刊载的。
It is publicised on another MG website which my mother found which was how I diagnosed the fact I had MG. I actually took ice cubes in with me when I went to the doctors. I applied the ice for around 10 seconds and then my eye stayed open for around two minutes.

当我母亲在另一个MG网站发现它后，我用它判断自己是否为MG。事实上当我去医生的办公室时，我是带着冰块的。我敷10秒冰块，这样我的眼睛能保持睁开大约2分钟。
No body really knows why it works. I am just glad it did, as for 8 months I went around with one eye shut and Doctors telling me I had bells palsy. After the doctrs appointment with the ice! I was put on neostigmine bromide and within 20 minutes of taking the first tablet I could see!

没有人知道为什么这么做有效。我很高兴它有效，8个月来，我只有一个眼睛能睁开，医生告诉我我有bells palsy（什么麻痹？）。这是在我带着冰块去看医生之后！而这是我服用新斯的明20分钟内！（这句很难译！！）
So you aren't crazy!

所以你不是在乱想！

Hi
I read your comments with interest. The ice cube test was first written about in the british medical journal in 2000 as a definative test for Myasthenia when it affects the eyes.
It is publicised on another MG website which my mother found which was how I diagnosed the fact I had MG. I actually took ice cubes in with me when I went to the doctors. I applied the ice for around 10 seconds and then my eye stayed open for around two minutes.
No body really knows why it works. I am just glad it did, as for 8 months I went around with one eye shut and Doctors telling me I had bells palsy. After the doctrs appointment with the ice! I was put on neostigmine bromide and within 20 minutes of taking the first tablet I could see!
So you aren't crazy!

你好！

我饶有兴致的看了你的研究。第一次提到冰块的实验是在2000年的英国医学杂志上，当时它对于肌无力患者中的眼肌型是作为一个权威性的实验的。

同时它也被发表在另一个MG的网页上，这个网页是我妈妈发现的，也是在上面我诊断出自己患了MG。在去看医生的时候我也确实随身携带了冰块。我用冰敷了10秒钟然后我的眼睛就能睁开2分钟。没有人真的知道它是怎么起作用的。我很开心能这样，因为8个月以来我都是一只眼闭着走路，而且医生告诉我会瘫痪的。（bells不知道是什么意思，估计是cells吧，意为细胞）在医生也认同了冰的效果以后（感觉应该是用before，以前）我都用新斯的明和20分钟一次吃第一次能看见时准备好的药片！

所以你们并不疯狂！

真是高手如云啊，继续感谢mgp 和 六月，我来翻译最难的一句：

thank you all for your input

谢谢大家的发言

呵呵,老大真是客气啊,这是我们应该做的啊，大家好才是真的好

［此帖子已被 六月 在 2007-11-13 13:38:12 编辑过］