網誌文章搜尋建議

給多發性硬化症MS病友和親友的建議:
如要搜尋站內相關文章可多利用
"搜尋此網誌的文章內容"的功能,這樣就可以快速的找到你想要得資訊而不需要從第一篇開始看了.
有關CCSVI(靜脈血管窄化及手術的資訊)可在相關連結以及相關MS blog內

推薦頻道:Gimmy a break

2009年12月31日 星期四

不變的是真心,不變的是理想,不變的是希望

今年最後一天了,冷鋒伴隨著小雨

溫度很冷,跨年夜就安安靜靜待在溫暖的家過吧

和家人一起,就是最棒的跨年了

今天也有一些事情要做,做完了就算是圓滿了這一年

也算對自己有所交待

這一年,我過得很精彩

大風大浪,起起伏伏

但不變的是真心,不變的是理想,不變的是希望

你今年過得如何呢?

新年快樂!! Let's reverse MS!! 讓我們2010年都痊癒吧!
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2009年12月24日 星期四

你能逆轉MS嗎? 有一位女性說: 可以的, 來看看他的說法

Can You Reverse Multiple Sclerosis? Yes, Says One Woman. Here's How.

How do you cure an incurable disease? Ask Kate Milliken. The 37-year-old New York City video producer was diagnosed with multiple sclerosis -- the autoimmune disease that causes everything from muscle weakness to complete paralysis -- three years ago. Today, she's better. And she has before-and-after MRI scans, as well as testimony from bigwig doctors at Mt. Sinai, to prove it.
Kate Milliken 一位37歲的製片 3年前被診斷出來為MS, 而且癱瘓, 而今天,他好多了. 由MRI 前後對照就可以證實.

Her story is controversial for several reasons. First, MS is considered by the medical community to be irreversible, so her claim gets dismissed as "power of positive thinking" nonsense.

他的故事一直以來都受到許多的爭論,因為一直以來,醫學界總是認為這是不可逆的過程! 所以他的正面思考也就被視為無稽之談!!

Milliken credits an intensive traditional medical regime, combined with yoga, holistic vitamin treatments and a Japanese "Reiki" healer. But she does also firmly believe that the power of the mind played a major role. "I taped a piece of paper to my bedroom mirror that said: Reverse it," Milliken tells Marie Claire in the magazine's January issue. "I started repeating those words to myself a thousand times a day: Reverse it. Reverse it. Reverse it."

她結合了傳統療法:瑜伽, 全面的維他命療法,以及日本"Reiki"治療方式.
最重要的,她相信自我的信念扮演了一個很重要的角色. 她打了一句話貼在臥室的鏡子上:
"我要逆轉MS" 然後她一天內告訴自己 超過上千次
Reverse it. Reverse it. Reverse it."

Talk like this isn't always welcome in the community of people who have the disease. "Once," Milliken says, "a woman who had suffered from multiple sclerosis for 30 years said to me from her wheelchair: Don't tell me to put a Post-it note on my mirror. Give me a break."

但是這樣似乎在MS的群體裡似乎不太受歡迎, 她說:有一次 一個患病30多年的而且坐在輪以上的女病患告訴她: 要我貼便條紙在鏡子上? 你嘛幫幫忙, 不可能啦....(無言)

嗯!看來這個故事只能告訴我們, 心裡的想法會真的影響身體,而且很嚴重!!

你要逆轉勝? 還是 "你嘛幫幫忙, 不可能啦..." 一切全決定在你
Reverse it, or Give me a break! It's up to you!!

或者, 兩者都行~ 累了就Give me a break, 睡飽了就來Reverse it !!

你又感覺到身上的小宇宙了嗎? 我在打字的同時, 我已經感覺到了!! 那你呢?

Let's make impossible nothing!!

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耶誕快樂! 希望大家都痊癒!

祝大家:

瑪莉克利司麥思^^
在這個屬於西方人的節日<):)

習慣了自己當自己的聖誕老人~
送自己聖誕禮物~
只是今年的耶誕禮物,我自己無法送
這個期望,有點難~
因為,我希望禮物是: "痊癒"

希望真有這麼一天!!

讓我們一起來祈禱, 來希望, 一起揮動那蝴蝶的翅膀

造成蝴蝶效應, 讓願望成真!!

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2009年12月20日 星期日

來自水牛城神經影像中心 (都卜勒超音波檢驗)的回應

日前我報名了此項的檢驗, 所收到的回應如下, 看來報名的人數相當多, 還需要一段時間來做甄選吧~

Thank you for your continued interest in the Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study.

Thank you for taking the time to provide your personal health information by completing the online questionnaire.

We are diligently processing all requests for information and the data that has been provided. You will be notified if you are eligible for further screening. We will also send notification to people who will not be eligible to participate in the current study. Due to the number of responses, it will take 1-2 months to process.

Please do not make any travel plans until your enrollment is confirmed. All testing procedures are paid for by BNAC. However, there is no financial compensation for your participation, or travel and related expenses.

Please only use the ctevd@bnac.net email address to communicate with our study.

No Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available upon request.

Thank you in advance for your patience.

Kind regards,

Cheryl Kennedy, LMSW, MPH

Clinical Trial Manger/Senior Project Coordinator

Buffalo Neuroimaging Analysis Center
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2009年12月19日 星期六

新式幹細胞治療法 硬化症青年手術後可走路

新式幹細胞治療法 硬化症青年手術後可走路

(本報雪梨訊)一名澳洲男子接受新式的幹細胞治療法,治療多發性硬化症,病情有很大的進展。 20歲的病者李賓(BEN LEAHY)在2008年確診患了多發性硬化症,一度病情急劇惡化,呼吸道衰竭,要進入深切治療病房。今年較早前做手術時還要坐輪椅,而且視力有問題。但 今天他已可走路,康復進展良好。 醫生先將病人骨髓內的幹細胞抽出,然後用化學物毀滅體內所有免疫細胞,最後將幹細胞注射回病人的骨髓內。 首都區腦科專家安德路(COLIN ANDRENS)醫生指出,醫生對阿賓手術後的效果也感到驚奇。至今病人只是右腳仍有一點軟弱,一隻眼失去小許視力,除此之外,健康完全正常。 澳洲醫生不願採用這種手術,因為幾年前這種手術的死亡率為8%左右。 安德路醫生在坎培拉找不到醫生做這種手術,最後在雪梨找到一名專科醫生曾做過同類手術。 據安德路醫生說,現時這種手術的死亡率已降至1%,他希望可以為其他病人做這種手術。有六至八成病人做了手術後,有可能停止病情惡化,其餘的病人甚至有可 能扭轉病情。 阿賓準備回校上課,希望修讀物理。(嘉文)

來自新浪網的翻譯新聞~
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徵求:首次臨床症狀且有高風險轉變為多發性硬化症的患者進行臨床試驗 from台大醫院

目前台大醫院正在對於經歷首次臨床症狀有高風險轉變為多發性硬化症的患者進行臨床試驗。
若有人只有第一次發病, 可以向台大聯絡, 進行進一步的檢查. 也好知道自己是否為MS的高危險群
提供可能為MS高危險群的症狀列表:

1. 長期自律神經失調
2. 長期失眠
3. 常有手麻或腳麻的症狀
4. 吞嚥困難(導致呼吸困難)
5. 突發性暈眩(天旋地轉,無法站立)
6. 突發性耳聾
7. 突然失去平衡感
8. 突然失去視力
9. 突然說不出話來(不論子音或母音)
10 便秘
11 腸燥症
12 手或腳突然無力

國立台灣大學醫學院附設醫院神經部現在正在對於經歷首次臨床症狀且有高風險轉變為多發性硬化症的患者進行臨床試驗。在參與試驗的期間,受試者仍可維持原來的日常生活,不需改變生活形態,歡迎患者及其家屬向本院神經部洽詢。

試驗中將提供定期的血液、生化、心電圖、核磁共振造影、神經學評估等檢查,並接受台大醫療團隊細心又專業的照顧。

本計劃主持人:楊智超醫師

分機:65345

研究助理:衛聿柔

諮詢電話 (02) 23123456 65345 0966-315-010

Emailbluejou@yahoo.com.tw

為了周遭朋友的健康, 請大家多多轉寄, 早期檢查確診, 早期治療, 才有痊癒的可能!
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2009年12月15日 星期二

使用成人幹細胞成功治療多發性硬化症 Multiple Sclerosis Treatment with Adult Stem Cells

Multiple Sclerosis Treatment with Adult Stem Cells
使用成人幹細胞治療發性硬化症 December 14, 2009

The latest success story comes from Australia. Ben Leahy, 20, was in a wheelchair and experiencing vision problems when he was treated earlier in 2009. Ben is now walking after treatment with adult stem cells. The treatment involves isolating the patient’s bone marrow adult stem cells, giving the patient mild chemotherapy to destroy the rogue immune cells that are attacking the nervous system, then re-injecting the patient’s adult stem cells.

之前最新的報導指出 一位罹患多發性硬化症的20歲澳大利亞小孩Ben Leahy, 他視力受損且無法行走只能坐在輪椅上.而在今年2009稍早的時候進行了成人幹細胞治療. 該治療包含了隔絕他的骨髓幹細胞, 並且給予溫和的化療來徹底摧毀不正常的免疫細胞, 然後再注入他自身的成人幹細胞.

While the Australian group has not yet published their results, the technique mirrors the treatment results published in 2009 in Lancet Neurology by Dr. Richard Burt’s team at Northwestern, where they reported that they had reversed the neurological dysfunction of early-stage multiple sclerosis patients. As Dr. Burt noted:

“This is the first time we have turned the tide on this disease.”

在澳洲的例子之前,Dr. Richard Burt 已經發表過類似的結果, 證明該治療能夠在早期發做的MS病患中予以回復. 而那是第一次人類能夠完全戰勝這個疾病.

The group is now engaged in a larger, randomized clinical trial for multiple sclerosis.

Edwin McClure was treated with his own adult stem cells for MS.

以下是另一位接受過自身成人幹細胞治療的病患Edwin McClure的影片


In a previous clinical review published in the Journal of the American Medical Association in 2008, the evidence indicated that adult stem cells were showing success for many diseases, including multiple sclerosis.

去年2008,也有證據指出成人幹細胞能夠用來治癒很多疾病,包括多發性硬化症

Barry Goudy is one of the MS patients who was helped by adult stem cell treatment.

以下是另一位接受過自身成人幹細胞治療的病患Barry Goudy的影片

Dr. Mark Freedman of the University of Ottawa has also reported similar success treating MS patients.

Burt and Voltarelli have also published successful results treating patients for other autoimmune diseases, including type I (juvenile) diabetes.

成人幹細胞:

屬於自身就所擁有的幹細胞, 不需要臍帶血. 可由骨髓抽取出.


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2009年12月14日 星期一

超強寒流報到,請各位病友一定要注意!!

星期3超強寒流報到,請各位病友一定要注意!!

最近一個月聽到很多病友都紛紛掛病號住院休息去了.

表示我們的身體和天氣息息相關, 一定要注意保暖!!

一定要小心, 特別是最近 忽冷忽熱, 溫差大, 請不要隨便出入人多的場所以免感冒

因為受到感染會觸發我們的症狀.

請帶口罩!!

保持輕鬆的心情, 待在家溫暖的被窩好好休息吧.

另外, 請不要吃太補的食品 如: 羊肉爐, 薑母鴨, 酒尾雞...熱補的別吃太多!!

今天的新聞就提到一位僵直性脊椎炎的患者吃到眼睛快瞎掉
(僵直性脊椎炎也是自體免疫失調的疾病)

自體免疫失調的病友們, 也請注意自己的飲食!!
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妻罹癌或多發性硬化症 2成夫離婚

妻罹癌 2成夫離婚
來自於「美國史丹佛大學醫學院」、「猶他大學醫學院」,美國 罹癌後不僅健康受威脅,婚姻也面臨重大考驗,據美國研究發現,配偶或同居者一方罹癌多發性硬化症等重症時,離棄配偶的機率,男性是女性的7.2倍

雖結婚前的誓詞,是即使對方生病也不離棄,不過在現實生活中卻常生變。
由美國史丹佛大學醫學院、猶他大學醫學院,和亨斯邁癌症中心合作,從2001~2006年追蹤515名病患,發現配偶罹患癌症多發性硬化症等重症時,離婚或分居率達11.6
若女性罹癌,離婚率或分居率達20.8,但如果罹癌的是男性,配偶離棄的機率只有2.9。
研究人員推論,男性選擇離開罹病的配偶,很可能是因男性的個性比較無法快速讓自己變成照顧者,要同時照顧親人和整個家庭,另外,年齡、婚齡長短,都會影響離婚或分居的機率,通常結婚時間愈長,關係愈穩定,愈不易離異,但若罹癌女性年齡愈大,伴侶離棄的機率卻愈高。


嗯,
癌症多發性硬化症 已經可以相提並論了~
男人啊, 別再落跑了,好嗎?
要結婚的男女, 請先想好誓詞, 再想想對方生重病的樣子, 然後才說 "I do"好嗎?
現實是殘酷的, 不要沒想就隨便說喔!
留下來的才是真愛~
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幹細胞治療之後 MS患者可以走路了

Man walks again after MS stem cell treatment - ABC News
幹細胞治療之後 MS患者可以走路了

這是世界第二個成功的案例 (中文要等一等)

An Australian man appears to have made a remarkable recovery from multiple sclerosis after receiving new stem cell treatment.

Ben Leahy, 20, was diagnosed with the disease in 2008 and ended up in intensive care at one point with respiratory failure after his condition deteriorated rapidly.

He was in a wheelchair and also had sight problems when he underwent the procedure earlier this year but today he is walking and recovering well.

Australian doctors removed stem cells from Ben's bone marrow, then used chemicals to destroy all the existing immune cells in the body before re-injecting his stem cells.

ACT neurologist Dr Colin Andrews says the positive results in Ben have surprised doctors.

"At the moment there's a good chance we may have arrested the disease," he said.

"He walks pretty well, there's only some mild weakness in his right leg and some visual loss in one eye and apart from that he's very intact," he said.

Dr Andrews says health professionals had been reluctant to use the technique because of the risk of death was at around 8 per cent several years ago.

He was unable to get consensus from his peers to go ahead with the treatment in Canberra and could not try the treatment on Ben until he found a specialist in Sydney who was doing similar work on people with other conditions.

He also had to get Ben well enough to be able to undergo the stem cell treatment and this took several months.

The risk of death from the procedure has now been reduced to 1 per cent and Dr Andrews says the outstanding results on Ben means it can now be an option for more people as a last resort if other treatments have not been successful in stopping the progress of the disease.

"I've told some of my MS friends in our association, they're quite pleased about it all," he said.

"It sets another landmark for people to work towards."

Mr Andrews hopes to start offering it to some patients, whom he describes as "special cases" in Sydney and Melbourne.

He says for some patients there will be a 60 to 80 per cent chance the progress of the disease can be stopped and for others a good chance it can be reversed.

Ben's mother Prue, who was afraid he was going to die, says it was beyond her expectations to have him walking again.

"What I got was more than I could have ever imagined or hoped for," she said.

Ben says he will now return to school and hopes to study physics.

Multiple sclerosis affects the central nervous system and stop nerve impulses travelling to the brain, spinal cord and eyes and those with the disease suffer from episodes which are unpredictable, with varying symptoms.

Almost 20,000 Australians have the disease.

澳洲約有2萬人罹患此一疾病~

A small trial done early this year overseas stopped symptoms and in a few cases reversed neurological damage of multiple scerosis.

又一個令人感到希望的曙光!!
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2009年12月9日 星期三

待證實的好消息

聽說

在北榮有組合和顱外靜脈經顱都卜勒(CTEVD), 若有,真是太棒了

不用跑到紐約州了^^
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2009年12月8日 星期二

CTEVD(組合和顱外靜脈經顱都卜勒) 檢驗徵求MS病患志願者

來自水牛城大學神經研究中心的研究消息:

記得那位義大利醫生利用超音波診斷出MS病患中有90%靜脈血管窄化現象的消息嗎?
目前他所屬的水牛城大學神經研究中心正在徵求志願者:

附上原網頁的連結 和 翻譯如下:

CTEVD /志願服務協調委員會的研究

謝謝您關注組合和顱外靜脈經顱都卜勒(CTEVD)評價在MS及相關疾病的研究。慢性腦靜脈功能不全(志願服務協調委員會)是一個持續的問題時,大腦的血 液流向正確有困難的心臟因堵塞或狹窄(變窄的血管)。其主要目標是CTEVD研究的目的是調查患病率(頻率)的志願服務協調委員會患者多發性硬化(MS) 相比,健康對照組(HC)和控制與其他神經系統疾病(神經系統疾病)。另一個重要目的是CTEVD研究的目的是探討志願服務協調委員會之間的關係和臨床, 磁共振成像(MRI)和環境,遺傳的結果MS患者中,並控制與神經系統疾病。

我們已經收到了很大的反響,最近媒體報導說,我們的研究。由於申請者的數目和經費有限,我們為您提供一些詳細的資料,我們的研究,並要求有關您的一些細節,以幫助我們評估您是否有資格參加。 目前,報名將會封閉,直至2010年1月下旬,以評估的初步研究結果,首次招收500名學科。 如果你想被認為這項研究或任何未來的研究,請按照以下說明。

1)申請將不獲處理根據我們的研究標準和順序接收。
2)請只使用 ctevd@bnac.net電子郵件地址來與我們的研究。
3)如果您決定寫信給上面的電子郵件地址,您將收到一個響應,並指示以完成網上問卷。
4)一旦小組評估您提供的信息在調查表中,你將接觸地告訴你,如果你有資格作進一步審查。

請注意,這是一個研究診斷性研究-沒有治療干預計劃在這項研究。 這項研究程序包括都卜勒/超聲波測試,血液採集,臨床檢查,並完成了環境問卷。有興趣的參與者也可以進行核磁共振檢查。一個子集,這些人也有與磁共振成像的頸部靜脈。

你必須:
-無論是成人還是兒童的確認質譜
-成人微軟必須得到履行的麥當勞標準
-兒科微軟必須履行的支持,克虜伯和國際標準
-有一個病程的臨床分離綜合症(獨聯體),復發緩解型(RR)的,二次進(SP)的,或小學,進(PP)的支持盧布林標準
-有正常的腎功能的支持,實驗室工作2個月內完成的磁共振成像測試(2週內,如果其他條件得到滿足)
-能夠有效溝通
-通篩選磁共振造影劑的安全性
-能夠前往紐約州水牛城完成測試(我們只有這個網站進行測試)

您不得:
-在Active復發或類固醇治療30天前,磁共振成像
-有任何血管或心臟問題
-有嚴重的認知障礙/功能障礙
-有歷史的藥物或酒精濫用,腦血管疾病或腦血管畸形,腦外傷和腦外傷
-有任何血管畸形(白塞病,布加氏綜合徵,先天性血管畸形,深靜脈血栓形成在過去一年中,慢性靜脈功能不全的下肢)
-懷孕或預計懷孕期間參與

如果你正在寫代表親屬或朋友,請告訴他/她直接與我們聯繫在此電子郵件地址: ctevd@bnac.net

請不要做任何旅行計劃,直到您的報名確認。所有的測試程序,費用,都由BNAC負擔。然而,沒有經濟補償您的參與,或旅費和有關費用

沒有都卜勒或MRV報告將給予參加者或他們的醫生。 研究報告的磁共振腦可應要求提供。

如果你覺得你有資格參與並願意前往紐約州布法羅的測試,請花一點時間來完成的網上問卷已旨在幫助我們的團隊在確定您的資格以及提供有價值的臨床資料,為您的研究記錄。調查問卷可以訪問通過訪問:
通過https:/ /vovici.com/wsb.dll/s/8727g41a07

由於觀眾反應熱烈,它需要一定的時間與您聯繫的任何步驟。不過,你可以在進程開始填寫網上問卷。謝謝提前感謝您的耐心。


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2009年12月5日 星期六

一部介紹多發性硬化症的電影: "迎戰轉捩點"

2009「讓愛走動 生命傳頌」身心障礙者影展 歡迎罕病病友索票~

   2001年起,由廣青文教基金會主辦的「圓缺之間」障礙影展至今已邁入第九屆,主要期望透過影像教育,讓身心障礙族群與其家屬能學習接納障礙、並借鏡他 人成功經驗,走出障礙陰霾。今年,配合2009年「愛很大 礙不怕」國際身心障礙者日系列活動,特別於12月4日至12月6日推出「『讓愛走動,生命傳 頌』身心障礙者影展全國巡迴映演宣導活動。

  為促進罕病病友體驗活動,本會特別與廣青文教基金會合作,特別邀請罕見疾病的朋友們,參與這次的影展盛宴。尤其於12月6日選播的三部電影:「最後的旅程」、「你好大膽」、以及「舞動生命」,皆為罕病相關的影片,鼓勵病友們攜家帶眷,一‧起‧看‧電‧影!

放映地點:文化大學推廣教育部B1表演廳(台北市建國南路二段234號)

場次:

日期

時間

片名

疾病

2009年12月6日(日)第一場

10:00-12:00

最後的旅程(The Last Fight)

肌張力不全

2009年12月6日(日)第二場

13:00-14:30

你好大膽(How Dare You?!)

漸凍人

2009年12月6日(日)第三場

14:30-17:00

舞動生命(Step Up)/
迎戰轉捩點(Multiple)

肢障/
多發性硬化症



注意事項:
1. 共有30位名額,請有興趣觀賞的病友們於12月4日前向本會病服組登記索票。
2. 其他影展相關資訊請參考圓缺影展活動網站http://www.kuang-ching.org/modules/tinyd5/index.php?id=61


北部的病友或者是其他在北部的朋友, 有空可以利用明天, 去看看下午場有關描述多發性硬化症的電影(迎戰轉捩點). 瞭解何謂多發性硬化症!


你也準備好要迎戰你人生當中的轉捩點了嗎?


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2009年12月2日 星期三

最新消息:美國FDA 駁回 Merk藥廠的MS 藥物申請

FDA Rejects MS Drug Application
美國FDA 駁回 Merk藥廠的MS 藥物(cladribine)的申請, 但Merk不會放棄,繼續協調和溝通.

German pharmaceutical company Merck KGaA on Monday said its application for U.S. approval of cladribine tablets for multiple sclerosis treatment has been rejected by the U.S. Food and Drug Administration.

The FDA issued a "refuse to file letter" to the company, which it does when it decides a new drug application isn't sufficiently complete.

"It is the worst of all possibilities," Sal. Oppenheim analyst Peter Duellmann said. "Until now, the question was whether the drug will get a priority review or not. Now the FDA won't even look at it."

Multiple sclerosis is a chronic, inflammatory condition of the central nervous system that can be disabling in its advanced stages. Cladribine, according to Merck KGaA, is a small molecule that may interfere with certain white blood cells, particularly lymphocytes, which are thought to be involved in the pathological process of MS.

At the end of September, Merck KGaA applied for U.S. approval of cladribine tablets as a potential short-course therapy for multiple sclerosis.

The move gave it a lead over Swiss competitor Novartis AG, which plans to file for European Union and U.S approval of FTY720, also known by its generic name fingolimod, at the end of this year.

"The company will work closely with the FDA to fully understand the FDA's concerns and define a path forward for a successful resubmission of this application at the earliest point in time," Merck KGaA said in a statement.

默克藥廠會密切和FDA合作並瞭解FDA的考量並且再重新申請!

Merck had applied to the European Medicines Agency for EU approval of the drug in July, in a bid to bring to market the first oral treatment against the nervous-system disease.

Write to Natascha Divac at natascha.divac@dowjones.com



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2009年11月30日 星期一

長期打嗝 恐罹多發性硬化症

長期打嗝 恐罹多發性硬化症

〔記者魏怡嘉/台北報導〕

「打嗝」有時並不單純只是腸胃毛病!台灣醫師研究發現,「打嗝」竟是「多發性硬化症」的臨床症狀表現之一。

台北榮總周邊神經科主任蔡清標振興醫院神經內科主治醫師王凱震,日前在香港舉行的亞洲多發性硬化症國際大會上發表此研究結果,引起各國相關領域醫師高度討論與重視,擬將「打嗝」列入臨床症狀診斷之一。

蔡清標表示,國內有十多名「多發性硬化症」女病患,發病初期都會打嗝,其中一人連續打嗝長達三個月,一直求助腸胃科,後來打嗝症狀逐漸好轉,未料兩年後,女子又因視神經炎、視力減退就醫,才被診斷出罹患「多發性硬化症」,事實上,她在兩年前開始連續打嗝時即已發病。

硬化疤痕組織無法修復

蔡 清標指出,「多發性硬化症」主要是因為身體免疫系統產生某種特殊抗體,來攻擊自己的神經組織,神經髓鞘是神經外面覆蓋的多層細胞膜,如同電線外包覆的絕緣 體一樣,髓鞘一旦受損,就像是電線外皮破損漏電,神經髓鞘在受損後,會自行修補,反覆修補後,留下白色的硬化疤痕組織,之後便無法再修復。這些硬化疤痕組 織往往有多處,所以稱為「多發性硬化症」。

好發於年輕女性

此病好發於年輕女性,如果硬化疤痕組織發生在脊髓,病患就會手腳無力、麻木;若發生在小腦,就會失去平衡;如果在視神經,就會視力模糊。亞洲人最常出現的症狀以視神經炎視力減退合併脊髓病變,產生手腳麻痺無力為主要症狀。

可經磁振造影掃描確診

蔡清標指出,「多發性硬化症」可經由磁振造影對腦部進行掃描確診,在硬化疤痕組織發生於脊髓的病患當中,有四十%疤痕組織是在延髓上,而延髓主要控制打嗝中樞、呼吸及吞嚥,這類病患九十%都有連續打嗝的症狀。

蔡 清標表示,台灣有近千名多發性硬化症病患每年新增一百五十名病患。其中已發現有十五、六名「多發性硬化症」女性病患在發病初期都有連續打嗝的症狀,短則 連續打一個星期,長則連續打一個月,甚至長達三個月。睡覺時,由於反射變弱,打嗝的症狀會減緩,不少病患都求助腸胃科,由於受損的神經短時間內會修復,所 以打嗝症狀好了後,病患多未再理會或是找出病因。

蔡清標提醒,早發現「多發性硬化症」,可大幅減少神經的傷害,若連續打嗝一星期以上找不出原因,又是年輕女性,就要特別注意。


不知道連續打嗝的症狀是如何? 是1分鐘內連續打嗝不停(每兩秒打嗝一次), 還是間歇性打嗝?
因為之前我在電視新聞上有看到一位美國小女孩(約4歲大)在1分鐘內打嗝約60次,鏡頭播出的時候她一直嗝個不停...說話都有困難...

我覺得自律神經失調應該就是多發性硬化症的火藥了, 剩下的就是引信~

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台灣人維生素D嚴重不足


最近完成的「國民營養健康狀況變遷調查」中,首次針對維他命D調查發現,國人維他命D嚴重不足,也可見為何國人骨質疏鬆情形越來越嚴重。

營養學者提醒,特別是女性重視美白、注意防曬,特別缺乏維生素D,且比一般男性更需要透過食物獲取維生素D,如果不曬太陽,至少要攝取5倍以上富含維生素D的食物才足夠。

維他命D不足,除了會影響骨質外,國外研究顯示,也可能影響骨骼肌肉承受癌症復發率以及自體免疫系統失調的疾病如:多發性硬化症,紅斑性狼瘡等。

正所謂 一白遮3醜的古老觀念, 應該是要好好的修正一下了, 不過沒有配合適當的運動依舊無法對維他命D作一有效得吸收. 現在的人多半都不運動, 也沒有足夠的時間運動和曬太陽(因為都是在室內坐在電腦前面工作一整天,要不就是在無塵室工作)

或許,不只是台灣人,甚至是全人類面臨的生活型態的演變所導致的結果.


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2009年11月29日 星期日

罕見十年 邀您共同見證~


台灣罕見疾病社會福利制度在政府及民間團體努力下已經發展十年了!這十年來,罕見疾病經歷過早期求藥無門四處借藥的困境,也曾經為了讓制度照顧孩子一輩 子,經歷立法與議題倡導的艱辛過程。這十年來,多少的罕見疾病病友及家庭因為政府及民間團體的共同努力下而實質受惠?而在國民健康局的相關罕病政策推動 下,提供哪些社會福利資源來照顧這些特殊的病患?

本集的「真情台灣」,將邀請衛生署國民健康局邱淑媞局長、罕見疾病基金會創辦人陳莉茵常務董事及兩位罕病病友家屬,一同在節目上與大家分享,台灣罕見疾病發展的重要十年,邀您一塊來見證!

◎節目來賓
邱淑媞 – 國民健康局局長
陳莉茵 – 罕見疾病基金會常務董事,也是罕病兒家長,病友暱稱為陳大姐
李瓊恩 –罕見楓糖尿症病友主昇母親
江鴻玲 –罕見趾甲髕骨症候群病患小彤的媽媽

◎播出時間
11月29日(日)
19:00~20:00
就在今天喔~

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Italian doctor may have found surprisingly simple cure for Multiple Sclerosis 這項發現掀起國際的一陣不小的騷動

Italian doctor may have found surprisingly simple cure for Multiple Sclerosis
這項發現掀起國際的一陣不小的騷動

An Italian doctor has been getting dramatic results with a new type of treatment for Multiple Sclerosis, or MS, which affects up to 2.5 million people worldwide. In an initial study, Dr. Paolo Zamboni took 65 patients with relapsing-remitting MS, performed a simple operation to unblock restricted bloodflow out of the brain - and two years after the surgery, 73% of the patients had no symptoms. Dr. Zamboni's thinking could turn the current understanding of MS on its head, and offer many sufferers a complete cure.

Multiple sclerosis, or MS, has long been regarded as a life sentence of debilitating nerve degeneration. More common in females, the disease affects an estimated 2.5 million people around the world, causing physical and mental disabilities that can gradually destroy a patient's quality of life.

MS目前全球有約250萬病人

It's generally accepted that there's no cure for MS, only treatments that mitigate the symptoms - but a new way of looking at the disease has opened the door to a simple treatment that is causing radical improvements in a small sample of sufferers.

Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.

Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?

He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.

MS病患中有90%以上的人發現有靜脈血管窄化的現象

He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.

He named the problem Chronic Cerebro-Spinal Venous Insufficiency, or CCSVI.

Zamboni immediately scheduled his wife for a simple operation to unblock the veins - a catheter was threaded up through blood vessels in the groin area, all the way up to the effected area, and then a small balloon was inflated to clear out the blockage. It's a standard and relatively risk-free operation - and the results were immediate. In the three years since the surgery, Dr. Zamboni's wife has not had an attack.

Widening out his study, Dr. Zamboni then tried the same operation on a group of 65 MS-sufferers, identifying blood drainage blockages in the brain and unblocking them - and more than 73% of the patients are completely free of the symptoms of MS, two years after the operation.

65位Ms病患在確認靜脈血管窄化的情性後進行手術, 手術後2年 超過73%的病患沒有復發..

In some cases, a balloon is not enough to fully open the vein channel, which collapses either as soon as the balloon is removed, or sometime later. In these cases, a metal stent can easily be used, which remains in place holding the vein open permanently.

Dr. Zamboni's lucky find is yet to be accepted by the medical community, which is traditionally slow to accept revolutionary ideas. Still, most agree that while further study needs to be undertaken before this is looked upon as a cure for MS, the results thus far have been very positive.

Naturally, support groups for MS sufferers are buzzing with the news that a simple operation could free patients from what they have always been told would be a lifelong affliction, and further studies are being undertaken by researchers around the world hoping to confirm the link between CCSVI and MS, and open the door for the treatment to become available for sufferers worldwide.

It's certainly a very exciting find for MS sufferers, as it represents a possible complete cure, as opposed to an ongoing treatment of symptoms. We wish Dr. Zamboni and the various teams looking further into this issue the best of luck.


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冬天暖身功 每天當早操做一做吧!

之前看到國民大會的特別來賓(高從文)所教導的活動身體筋骨的方法

和大家分享: 其實很多像我們小學做的早操都很有用, 重點是要 "持之以恆"




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2009年11月27日 星期五

美多發性硬化研究新曙光 血管阻塞倒果為因

美多發性硬化研究新曙光 血管阻塞倒果為因 【19:45】

前一篇的報導 已出現在自由時報上

〔中央社〕美國科學家正努力證實一項治療「多發性硬化症」(MS)的新理論,希望能證明這種發生在中樞神經系統的慢性疾病,是由於頸部和腦部靜脈血液流通受阻所造成。

英國廣播公司(BBC)報導指出,水牛城大學(TheUniversity of Buffalo)研究團隊深受義大利醫生桑波尼(Paolo Zamboni)的MS研究所吸引,因此希望能夠擴大證實他的理論。桑波尼認為,由病人的腦部掃描可知,90%的多發性硬化是因為靜脈流通受阻,使得腦部 受損所導致。

由水牛城大學茲瓦迪諾瓦博士(Robert Zivadinov)領導的團隊,計畫招募1100名多發性硬化病人參與研究,同時邀請600名健康人士和非MS的腦性疾病患者為對照組進行研究。

研究員將用超音波掃瞄多發性硬化病患,找尋頸部和腦部靜脈是否有阻塞現象。

水牛城綜合醫院(Kaleida Health)醫療長巴羅斯基(Margaret Paroski)表示,這項研究將顛覆先前普遍的認知,認為多發性硬化是異常免疫反應的結果。

她說:「當我在醫學院唸書時,我們常認為胃潰瘍是因壓力造成。不過我們現在知道,80%的病例是由於細菌感染。而茲瓦迪諾瓦博士的多發性硬化研究,可能形成全然不同的病因觀。」

義大利費拉拉大學 ((University of Ferrara)桑波尼醫生相信,血管阻塞是多發性硬化的原因而非結果,阻塞會導致血液中的鐵質進入腦部組織。他曾進行相類似的靜脈疏通手術,以促進血液正常流動。

他在接受加拿大電視公司(CTV)訪問時表示:「我在多發性硬化病人身上找到靜脈阻塞的證據。我確信這對大眾非常地重要。」(譯者:中央社盧映孜)

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2009年11月24日 星期二

重大的醫學發現 : MS的原因找到了?!


The Liberation Treatment: A whole new approach to MS

一位義大利外科醫師,Dr. Paolo Zamboni利用超音波檢查人體的神經細胞,發現有MS病患中的血管有某部分會呈現"窄化"現象. 而這些現象正是引發MS的原因 (這真是太棒了! 找到了目前看起來算是物理上最接近的原因了!!)你們一定要點選第一行的連結到原始的網頁去看影片,說明的相當棒且清楚!!

CTV.ca News Sta

Date: Sat. Nov. 21 2009 6:02 PM ET

Amid the centuries-old castles of the ancient city of Ferrara is a doctor who has come upon an entirely new idea about how to treat multiple sclerosis, one that may profoundly change the lives of patients.

Dr. Paolo Zamboni, a former vascular surgeon and professor at the University of Ferrara in northern Italy, began asking questions about the debilitating condition a decade ago, when his wife Elena, now 51, was diagnosed with MS.

Watching his wife Elena struggle with the fatigue, muscle weakness and visual problems of MS led Zamboni to begin an intense personal search for the cause of her disease. He found that scientists who had studied the brains of MS patients had noticed higher levels of iron in their brain, not accounted for by age. The iron deposits had a unique pattern, often forming in the core of the brain, clustered around the veins that normally drain blood from the head. No one had ever fully explained this phenomenon, considering the excess iron a toxic byproduct of the MS itself.

他懷疑血液中過多的鐵會聚集在血管(靜脈)周圍,而阻礙了流出頭部的血液,而過去沒有人完全解釋這個現象,只是認為鐵的存在是一個毒性物質.

Dr. Zamboni wondered if the iron came from blood improperly collecting in the brain. Using Doppler ultrasound, he began examining the necks of MS patients and made an extraordinary finding. Almost 100 per cent of the patients had a narrowing, twisting or outright blockage of the veins that are supposed to flush blood from the brain. He then checked these veins in healthy people, and found none of these malformations. Nor did he find these blockages in those with other neurological conditions.

Dr. Zamboni利用都卜勒超音波檢驗MS病患的頸部而有重大的發現!! 他所檢查的MS病患中全部的頸部血管都有只窄化的現象, 而正常人則不會有此一問題!!

"In my mind, this was unbelievable evidence that further study was necessary to understand the link between venous function and iron deposits on the other," Zamboni told W5 from his research lab in Ferrara.

What was equally astounding, was that not only was the blood not flowing out of the brain, it was "refluxing" reversing and flowing back upwards. Zamboni believes that as the blood moves into the brain, pressure builds in the veins, forcing blood into the brain's grey matter where it sets off a host of reactions, possibly explaining the symptoms of MS.

也因為如此, 所以血液無法順利的流出或流進大腦,進而造成腦部血管壓力的上升而產生了白色的斑塊

"For me, it was really unbelievable to understand that iron deposits in MS were exactly around the veins. So probably, it is a dysfunction of drainage of the veins," Zamboni said.

"This is very important, because iron is very dangerous, because it produces free radicals, and free radicals are killers for cells. So we need to eliminate iron accumulation."

我們要解決鐵的不當聚集和沈積!!

Zamboni dubbed the vein disorder he discovered CCSVI, or Chronic Cerebrospinal Venous Insufficiency(請按此連結瞭解何謂CCSVI), and began publishing his preliminary research in neurology journals.

CCSVI: 靜脈血管無法即時的將缺氧的血液排出.

He soon found that the severity of the vein blockages were located corresponded to the severity of the patient's symptoms. Patients with only one vein blocked usually had milder forms of the disease; those with two or more damaged veins had more severe illness.

Zamboni found blockages not only in the veins in the neck directly beneath the brain -- the jugular veins --but in a central drainage vein, the azygos vein, which flushes blood down from the brain along the spine. Blockages here, he found were associated with the most severe form of MS, primary progressive, in which patients rapidly deteriorate. For this form of MS, there currently is no effective treatment.

Dr. Zamboni發現不只在頸部腦幹下方的靜脈會發生,很多靜脈都會發生,如: the azygos vein(jugular veins;靠近脊椎的靜脈)

As for how these vein abnormalities form, Zamboni isn't sure. He believes, though, that congenital defects, problems that likely formed before birth, can be blamed for most of the problems, though this has not been conclusively proven.

但是為何會造成靜脈的窄化呢? 仍無法回答此一問題.

Most neurologists Zamboni initially approached with his findings dismissed them. But one specialist, Dr. F. Salvi, at Bellaria Hospital in Bologna, was intrigued by the concept. He began sending Zamboni MS patients for CCVIS testing, to see if what he was finding was correct. The images of narrowed or blocked veins, called "strictures," were irrefutable for Salvi.

Focus on a treatment

But Dr. Zamboni had an even more important idea. If key veins of MS patients were blocked, perhaps he could open them and restore normal blood flow?

Taking a page from standard angiography, in which doctors use balloons to open up blocked arteries that feed blood from the heart, he enlisted the help of vascular surgeon Dr. R. Galeotti, also at the University of Ferrara and Santa Anna Hospital. Three years ago, the team began a study in which they treated 65 MS patients to see if endovascular surgery would restore flow in these vessels and lessen MS symptoms.

The study detailing those results will be published in the Journal of Vascular Surgery on Nov. 24. But preliminary results, already released, show patients had a decrease in the number of new MS attacks, a big reduction in the number of brain lesions that define MS, and improved quality of life. The only time symptoms returned for the patients was when the veins re-narrowed.

Because the surgery freed the blood flow, the team dubbed the procedure "The Liberation Treatment."

Zamboni's sense is that the earlier patients are diagnosed and treated, the more function they will preserve, and the less damage the improper blood flow will do to the brain.

"Because MS is a progressive disease and strikes young people, if we lose time, there are a lot of young people that will progress without possibility to get back. This is very heavy for me," he says.

Zamboni has also been studying the prevalence of CCSVI with a team at the University of Buffalo in New York, in collaboration with Dr. Robert Zivadinov. That study, to be published in January, has looked at 16 MS patients, including eight from the U.S and eight from Italy. All have been found to have blocked veins of CCSVI, just as Zamboni described, and all eventually underwent the Liberation Treatment.

Relief for patients

One of those patients was Buffalo resident Kevin Lipp. Lipp had MS for over a decade, and as part of the study, discovered he had five blocked veins in his neck. After undergoing the Liberation Treatment 10 months ago, he says he hasn't had a single new MS attack.

Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again. Rather, it seems to stop the development of further MS attacks, and in some cases, improves movement and decreases the debilitating fatigue that are the hallmarks of MS.

Zamboni強調, 這種血管擴張手術(Liberation Treatment )無法使坐著輪椅的病人再度站起來,但是這能夠阻止MS的發作, 而且有例子顯示, 能夠改善行動能力和減少疲勞感

The foundation that has sponsored Zamboni's research, the Hilarescere Foundation, also urges cautious restraint.

"We can't give the illusion to patients that this is a guaranteed treatment and it is easy. This is not right. And we have never done this," says Hilarescere President Fabio Roversi-Monaco. "We don't say this is a cure for M.S. We only say that research is advancing, and there is encouraging data but we are waiting for more conclusions."

Dr. Zivadinov in Buffalo is now starting a new study, recruiting 1,600 adults and 100 children, half of them MS patients. He plans to use ultrasound and MRI scans to confirm if those with MS also have CCSVI and if their family members have the abnormalities too.

Prof. Mark Haake, a neuro-imaging scientist at McMaster University and Wayne State University in Detroit is also intrigued by Zamboni's findings. He has long been seeing iron deposits in the brains of MS patients using a specialized MRI analysis called SWI - specific weighted imaging. When he saw Zamboni's initial publications, he immediately contacted the Italian doctor and began collaborating.

Population studies under way

Haake too is initiating a study, asking neurological centres across North America and Europe to take some extra MRI scans of the neck and upper chest of MS patients. The scans can then be electronically sent to his research team for analysis. He believes this grassroots approach could spur larger and more in depth studies. He's hoping he can engage MS specialists and vascular surgeons, interventional radiologist around the world to study the theory and then move to diagnosing and treating MS patients quickly.

"I think patients do play a role, because there are millions and millions of dollars donated to MS Societies and a lot of money set aside by the government to study MS research and right now, 99.9 per cent of that money goes somewhere else," he told W5.

"So the patients need to speak up and say 'We want something like this investigated, at least at an early stage, to see if there is credence to this theory.' Even if it is 10 or 20 per cent of these people who can be helped, that needs to be investigated," says Haacke.

Haake's research is being done with no funding; he's unwilling to wait the nine months to a year needed to get formal research funding applications approved. Urgency, he says, is needed in finding the answer to the question of whether Dr. Zamboni is right.

"Certainly, I continue my battle because I am fully convinced that this is the right thing for the patient," he says.

The MS Societies of Canada and the U.S. are reticent to support Zamboni's theories. They maintain that: "Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS... It is still not clear whether relieving venous obstructions would be beneficial."

Interest in CCSVI growing

But CCSVI has become a subject of intense interest among MS patients who are texting and emailing details of Zamboni's work, locating the few centres around the world that have started to work on studies on CCSVI and the Liberation Treatment.

Zamboni says every day, MS patients hear about his theory and either write, email or call him asking for treatment he can't yet provide. Still, some surgeons in the U.S. are now offering the surgery Zamboni's team has pioneered.

Jeff Beal, an L.A-based, Emmy-Award-winning musical director has already paid to have the surgery procedure. After he was diagnosed with MS five years ago, he was left unable to work a full day and worrying he would spend the rest of his life in a wheelchair. Unable to come to terms with the diagnosis, his wife, Joan, set to find new treatments and eventually came upon Zamboni's work. Unable to get her husband treated in Italy, she convinced a Californian vascular surgeon who already performs similar surgery on leg veins to look at Zamboni's work and test Jeff for CCSVI. Jeff was diagnosed with two blocked jugular veins and treated with the Liberation Treatment. (with a slightly different procedure than the italan one..using Stents) He now says he has much more energy and none of the chronic fatigue that used to limit his activity.

"I reached what I would call sort of a higher plateau, in the sense of the most debilitating symptom, which is the fatigue. So, I still have fatigue every day, I still battle it; it's still one of my symptoms. But in terms of the total reservoir of energy, it's much greater than it used to be. And that's a huge gift, especially to my family," Beal told W5.

His wife Joan was delighted with the surgery's results.

"Suddenly, he's helping Henry with his homework and he's playing trumpet duets with Henry and he's awake. And there's this presence in the house that hadn't been there for two years," she said.

Joan has now become a "cheerleader" of Zamboni's work on MS chat sites, urging other patients to show their neurologists the material being published by the Italian team and to ask them to consider setting up a study in other MS clinics.

Among all of Zamboni's success stories and the patients who sing his praises is his wife Elena. Her MS caused her to lose her vision for a time and develop what she called "violent" attacks. She had difficulty walking and was losing her balance and feared a life in a wheelchair unable to care for herself. Elena became one of her husband's first ultrasound test patients and was found to have a complete closure of the azygos vein in her central chest. She was one of the first to be liberated almost three years ago. After having regular debilitating MS attacks for nearly a decade before, Elena has been symptom-free ever since. An elegant, intelligent woman, she now has a quick walk, with no sign of disability. Her husband couldn't be happier.

"What I think is this is probably the best prize of the research," says Zamboni.

偉大的Dr. Paolo Zamboni!!

無疑的, 這是一項對於阻止Ms再發做的一項外科手術的成就!!



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2009年11月21日 星期六

保險對我們病友和家人的重要性

在歷經這一切之後(去年5月下肢癱瘓後), 讓我對於保險有了更深一層的認識
特別是現在社會當中曾出不窮且越來越多的怪病下(沒有藥可醫的病)
當我們身體還是健康的時候, 一定要去保個險,
因為全民健保不會負擔這麼多的龐大醫藥和住院費用(你有錢也不一定住得了院) 甚至,短期內可能需要的看護費用

一般而言,保險對於我們這種病友的部份應該是醫療險(住院)的內容
通常,急性發作最需要得就是3~5天的住院, 一般的醫療險的內容多半住院一天給付為1500
實在不太夠, 還好我本身有保3個險所以住院的費用都還能夠勉強完全給付(當然不希望用到)

但是, 若已經確診, 則在醫療紀錄上會有紀錄(多發性硬化症)
當然還有一點, 是否已經有重大傷病卡或是身心障礙手冊?
所以當你在審視醫療保險的內容時(一定要拿到合約版本),
並且看清楚但書的部份(但書會說明許多重大傷病只有一次給付之類的字眼)
若但書沒有註明
多發性硬化症的話,就可以再加保.

若有上述其中一項,則可能會有所問題,不然就是保費會比較高.

趁著健康的時候好好審視一下自己的保險合約吧.
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2009年11月17日 星期二

天氣驟冷會讓肢體緊繃難受

最近天氣驟冷, 我的下肢就有感覺了, 突然間變得比較緊繃和難受

也聽說有病友也有類似的情形

在這裡千萬呼籲大家, 一定要做好保暖.

因為身體對於冷熱的敏感度大大提高

也讓肌肉多少受到影響

保持良好血液循環有助於症狀的紓解

重點是: 保暖不代表泡湯喔!!(不要大於體溫)

只要維持體溫不要太低即可.
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2009年11月15日 星期日

當兩性關係遇上重大疾病時

Men more likely than women to leave partner with cancer

當兩性關係遇上重大疾病時
本篇文章是以美國境內罹患有重大疾病如癌症和MS的兩性關係所做的調查, 中文要等一等

NEW YORK - Women are six times more likely to end up separated or divorced if they are diagnosed with cancer or multiple sclerosis than if their male partners were facing the same illness, according to a U.S. study.

The study confirmed earlier research of a divorce or separation rate among cancer patients of 11.6 per cent, similar to the general population, but found the rate jumped to 20.8 per cent when the woman was sick versus 2.9 per cent when the man was ill.

"Female gender was the strongest predictor of separation or divorce in each of the patient groups we studied," said Marc Chamberlain, director of the neuro-oncology program at the Seattle Cancer Care Alliance.

The researchers said the reason men leave a sick spouse can be partly explained by their inability to rapidly adjust to becoming a caregiver and to look after the home and family.

The study also found links between age and length of marriage and the likelihood of divorce or separation. Longer marriages were likely to remain more stable but the older the woman, the more likely the partnership would end.

The study, conducted with the Huntsman Cancer Institute at the University of Utah School of Medicine and Stanford University School of Medicine, was based on following 515 patients from 2001 and 2002 until 2006.

The patients were divided into three diagnostic groups: those with a malignant primary brain tumor, those with a solid tumor with no central nervous system involvement, and those with multiple sclerosis. Almost half of the patients were women.

Chamberlain said the study was initiated because doctors noticed that in their neuro-oncology practices, divorce occurred almost exclusively when the wife was the patient, but in all cases the woman was more likely to end up alone.

Researchers also looked at the quality of life among the patients who separated or divorced.

They found these patients used more anti-depressants, took part less in clinical trials, had more frequent hospitalizations, were less likely to complete radiation therapy and more likely not to die at home.

The researchers said in the study to be published in the journal Cancer that medical providers be sensitive to possible marital discord in couples affected by a serious medical illness, especially when the woman is the affected spouse.

"Early identification and psychosocial intervention might reduce the frequency of divorce and separation, and in turn improve quality of life and quality of care," they said.

希望大家都能不離不棄~
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2009年11月13日 星期五

居家值機計畫 身障就業新模式

居家值機計畫 身障就業新模式

更新日期:2009/11/12 15:05

勞委會今年三月起推動身心障礙者「居家值機實驗計畫」,透過電信網路等設施,八位中重度以上身心障礙者不必出門,在家就可當起稱職的職災諮詢客服人員。勞委會主委王如玄表示,勞委會有相關補助及獎助措施,希望企業多加利用,給身心障礙朋友一個機會。(黃悅嬌報導)

十四年前因車禍造成下半身癱瘓的許豈逢,現在透過電信科技與電腦網路等軟硬體設施,成為勞委會職訓局職災諮詢中心的客服人員,跟其他七位中重度身心障礙者一起參加勞委會的「居家值機實驗計畫」,許豈逢說,他用聲音重新找到生命的出口。

勞委會表示,這項計畫從今年三月上線,到十月底止,服務總量超過兩萬兩千通,撥通率與15秒內應答率都是100%,顯示身心障礙朋友透過專業訓練後,也能呈現良好的服務績效。

由於試辦成效良好,勞委會主委王如玄呼籲企業多加利用,給身心障礙者朋友一個機會,勞委會也提供相關僱用獎助、職務再設計補助、職前培訓補助。

提供給行動不便的病友謀生的機會,也是政府的美意, 讚!


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2009年11月10日 星期二

新藥給了MS病人新的希望

New drug therapies and promising studies offer hope for MS patients
新藥給了MS病人新的希望 By Iris Winston , For Canwest News Service November 8, 2009
Early diagnosis of multiple sclerosis can change the lives of people living with this chronic disease of the central nervous system.

“Today, there is a huge urgency to make the diagnosis because we know that early and aggressive treatment can alter the course of the disease,” says MS specialist and University of Alberta assistant clinical professor Dr. Brad Stewart. “Back 15 or 20 years, diagnosis was less urgent because we had nothing to offer the patient.”

過去的15~20年來, 因為診斷的不積極導致治療的失敗, 其實早期的發現和積極的治療有機會治癒.

Then, says Dr. Ruth Ann Marrie, the director of the multiple sclerosis clinic of the University of Manitoba Health Sciences Centre, “treatment largely focused on acute management of relapses — those times when people presented with sudden worsening of symptoms like vision loss, limb weakness or numbness. We tried to help them manage some of the chronic symptoms like fatigue and difficulty in walking.

大多的治療都關注在解決復發的問題; 視力喪失; 下肢無力; 或麻痺; 疲累等症狀

“We didn’t have medication that we thought could alter the long-term course of the disease.”

但我們從來都不真正做長期的改變

In 1995, the first drug treatment that could modify the disease was approved. Shortly afterwards, three more drugs of the Interferon type were added. In 2006, a fifth drug was approved.

“All five” — Avonex, Betaseron, Copaxone, Rebif and Tysabri — “are drug therapies that attenuate the disease by helping control the intensity and frequency of attacks,” says Stewart Wong, the Multiple Sclerosis Society of Canada’s media and public relations national senior manager.

Avonex, Betaseron, Copaxone, Rebif and Tysabri這些藥物只能夠控制復發的頻率和降低強度

“When you treat MS earlier with some of these disease-modifying therapies, the course of the disease is easier to manage and you have a better quality of life…. The mid-1990s opened the way to a sustained period of hope and progress in medicine, the course of research and how people can live with the disease.”

But Vancouver MS specialist and former medical director of the city’s MS clinic Dr. Stanley Hashimoto says the impact of the therapies introduced in the mid-90s was relatively modest.

“Their impact was exaggerated significantly through a lot of marketing,” he says.

其實,藥物的影響被市場所誇大了

“We needed something that had an actual benefit in terms of therapy and disease modification.”

Dr. Paul O’Connor, the multiple sclerosis program director of St. Michael’s Hospital, Toronto, and president of the Canadian network of multiple sclerosis clinics, agrees “these drugs have modest effectiveness, but their introduction in 1995 did mark the advent of a new era (in MS treatment).”

The next generation of drugs is looking even better, says Stewart.

下個世代的藥物一定會更好

“All the years of research are really bearing fruit. We may not have a cure yet, but if you can get someone to go into remission 90 or 95 per cent of the time, that’s a whole lot better than we have now. And we have also had some advancement in how we treat secondary progressive MS. We now have an oral medication that works up to 70 per cent of the time to treat exacerbations.”

目前我們已有口服的藥物來應付第二型的MS(漸進廢退型)且成效可達70%

加油吧!! 研究人員和病人!!


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心情點播:心中仍然有一份對伴侶的希望之火

前不久某日,因為睡眠中斷,結果醒來後就睡不著, 去看看電視,無意中看到了一段電視訪談節目

主角是:黃乃輝台灣新移民成長關懷協會理事長曾獲十大傑出青年獎。卻不向命運低頭,努力向生命奮鬥挑戰的故事。同時也訴說著他尋找到人生中伴侶的動人故事
黃乃輝從小因腦性麻痺,導致說話,走路都十分困難。九歲才會站立,十三歲才入小學,父母離異後拋下他,只得和奶奶四處漂流遷徒。坎坷的命運,學習中的困境,國中三年便挑起生活重擔的壓力,在半工半讀的艱辛生活搏鬥中,交織著學校,社會的人間溫暖,使得他的個人成長之路,有如攀爬的荊棘,向著陽光,努力伸展,從而爭出一片寬闊的天空。也為我們的社會留下溫馨感人的寫照。人生是一連串的挑戰,每個階段必有每個階段必須突破的障礙,不要以為自己能力不足,就退縮不前,人活著,就必須面對種種考驗,您用什麼心態去對待,就能決定什麼樣的方向,也能決定什麼樣的實踐力,更能決定最後應得的成果;我們常喟嘆,人生不如意十之八九,但當面臨困境時,您又是如何面對?路,是人走出來的,只要有心向前,終能披荊斬棘,達成目標。就像黃乃輝,抱著「取之於社會,用之於社會」的心,他不但在花蓮成立全台灣第一個殘障插花訓練創業協會,幫助障同胞學習與創業,更由於他的一席話,促使政府為殘障朋友舉辦多項活動,更加重視殘胞的福利。

因緣際會取了來自柬埔寨的強娜威, 一位17歲的少女, 和他年齡相差19歲. 雖然他們的相處過程中不乏摩擦,但是強娜威並沒有因此打退堂鼓(雖然當時見面之後有如從天堂落入地獄一般), 至此,我深深地佩服強娜威本人!! 他是如此的認命,且也不像命運低頭, 如今他們也有一個可愛的女兒. 就像一般的小家庭一樣,過著平凡人的婚姻生活...

後來有長輩勸我娶外籍新娘,我跟人家去柬埔寨湊熱鬧,只看了兩個女孩,第一個不要我,第二個我只跟她見面四分鐘,我問她敢不敢嫁給我,她說:「我家這麼窮,你都不會看不起我,我為什麼不敢嫁給你?」我就娶了她。
Q:你沒考慮跟她個性合不合?
A:沒有。殘障對我來講不悲哀,結婚才真不堪回首,最初半年我很後悔結婚,兩人語言不通,互相不了解
又沒感情,什麼都能吵,我煮菜給她吃,她都不吃,只拿柬埔寨帶來的辣椒加鹽巴拌飯。我熬了半年,每天都繃得很緊,等她會講中文後感情才變好。

慶幸能娶到好老婆
但我娶外籍新娘是好的,因為腦性麻痺者容易神經緊張,做愛一興奮就出來了,無法玩很久,而且做一次愛要躺一天才能恢復,非常疲勞,台灣女孩不可能接受。我老婆跟我說:「人家罵我騙你錢,我幹嘛騙?要害死你很簡單,一天跟你要三次,保證你就掛了。」
有個越南新娘問我會不會擔心我老婆跑掉?其實我不擔心她跑掉,我擔心我跑掉,因為腦性麻痺不可能活很久。我殘障能娶到好老婆,她這麼窮的小孩能住豪宅,我們都很滿足了。

以下節錄某些訪談:
Q:你支持身心障礙者娶外籍新娘嗎?
A:我不反對,但至少要像我這樣能生活自理,結婚才有意義。有些殘障者嚴重到只能在地上爬,還結婚,我看了傻眼,他們搞不好連什麼叫性關係都不懂,只是花錢買個新娘,婚姻能長久嗎?
一 般女生會接受肢體殘障,但很難接受我們腦性麻痺患者。我25歲時,有個台大女生很仰慕我,看我失戀,就說:「能愛的你不愛,不可能的你偏偏愛。」一年後,她懷孕了,我想結婚,她不要,把孩子拿掉後就離開我,因為她父母反對。你看,她已對我付出那麼多,一碰到要結婚還是不願意。


對於他們的過程和心裡,我心中著實能夠體會, 充滿了萬般的無奈和辛酸, 不過, 我想, 既然黃乃輝先生的遭遇都已經如此,還能夠獲得上天的眷顧, 那我又何必當個楚留香(千山我獨行不必相送)呢? 雖然這樣對感情雙方都沒有負擔, 但是自己內心身處總是覺得有那麼一絲絲的火苗依舊點燃著. 希望能夠遇到對得一起扶持走完人生道路的伴侶. 而且是能夠彼此相處自在的伴侶,就像朋友一樣. 誰叫我是一個保有赤子之心的純真小孩,就偏偏相信Love~ I believe in Love!! And you?

大家可以上google搜尋 "強娜威" 和 "
黃乃輝" 就可以知道他們的故事~
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2009年11月8日 星期日

好文章分享

對於病友們而言,與疾病共行的人生路,荊棘滿佈、崎嶇漫長。從被告知患病的開始,到頑強抗爭、最後與疾病共處的過程中,不論您是採取無為而治還是短兵相 接;是視而不見還是兵來將檔水來土淹,在面對著有限但未知的生命長度,您是以怎樣的勇氣及態度沿途披荊斬棘,開拓出寬廣無悔的人生路呢?又或者,您是罕病 的家屬,面對家中生病的家人、肩負者沈重的照顧責任,您又是如何在人生路上自我調適?正如一位病友所言「人不是為了痛苦而活著,而是為了追求幸福才承受痛 苦這句話有點兒給它沈重...。

對生命的喝采:走出自己的路

佳文共欣賞(引述連結多發性硬化症病友的文章)

走出自己的路1

走出自己的路2

走出自己的路3

走出自己的路4

走出自己的路5

大家都很辛苦的一路走過來,也都不畏懼這個病,
這或許是要給我們一種考驗或試鍊, 也或許是要我們停下腳步,好好的想一想, 重視自己的身體.

不僅是
多發性硬化症病友,其他的罕見疾病病友也是一樣面臨著考驗或試鍊, 讓我們一起加油吧!

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中國科研人員找到多發性硬化病潛在藥靶

中國科研人員找到多發性硬化病潛在藥靶
2009年10月20日 14:10 來源:解放日報 徐瑞哲

我國科研人員揭示出一類核糖核酸在自身免疫性疾病中的調控新機制,並提示多發性硬化病可能存在新的診斷依據和藥物作用靶標。這是裴鋼院士研究組及其合作者的最新研究成果,相關論文昨天被國際著名學術期刊《自然·免疫》線上發表,並將正式出版。

  多發性硬化症源自中樞神經系統病灶,是一種常見的自身免疫性疾病,臨床表現包括視物模糊,感覺、運動異常,智慧、情感等高級功能障礙。因其在中 青年人群中多發,且有較高致殘率,對社會和家庭造成極為不良的影響。數據顯示,在西方一些國家,該病患病率高達十萬分之一百到三百;而在我國,據不完全統 計,該病患病率也已達約十萬分之五,並呈逐年上升趨勢。

  近年來,免疫學家在人體內發現一種名為“TH—17細胞”的細胞亞群,它們被大量誘導並主動入侵中樞病灶部位,能加速誘發組織損傷。科學界認為,深入理解和揭示它們的分子調控機制,對於治療多發性硬化症等自身免疫性疾病具有重要意義。

  在中國科學院上海生命科學研究院生物化學與細胞生物學研究所,裴鋼研究組通過多年來在細胞分子層面的研究,發現一種特殊核糖核酸“非編碼小 RNA”,與“TH—17細胞”的分化密切關聯。他們證實,在實驗用的多發性硬化症模型小鼠中,人為提高這種小RNA的水準,便會加重小鼠病情;而抑制該 小RNA水準,則能顯著減輕病情。研究表明,正是這種“不受歡迎”的小RNA,促進了小鼠的外周淋巴結以及中樞病灶部位的“TH—17細胞”分化。

  專家表示,這項研究不僅揭示了“非編碼小RNA”在多發性硬化症發生過程中的新機制,也為包括多發性硬化症在內的自身免疫性疾病提供了可供借鑒的治療策略。據了解,此項成果得到科技部、國家自然科學基金、市科委和中科院資助,課題組已為該成果申請相關專利。

  《自然·免疫》同行評審專家評價認為,這一成果有可能為該領域研究開闢新的思路和方向,它提示:這種小RNA有望開發為一個診斷多發性硬化症的靈敏標誌物,以及潛在的藥物設計靶標。(徐瑞哲)



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2009年11月3日 星期二

最近沒事別到人群多的地方喔

很遺憾的,我與幾米的星空特展就這麼的錯過了

因為工作的關係和天候的因素等等,讓我無法成行

沒關係,我相信之後會再有機會的

看到新聞上各個國家新流感H1N1盛行的消息,

要敬告大家,沒事別出入公共場所

旅展沸沸揚揚,應該會對新流感的疫情推波助瀾吧!


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2009年10月27日 星期二

少女久坐打電腦 下背痛到坐輪椅

少女久坐打電腦 下背痛到坐輪椅

高麗玲╱台北報導】下背痛是很普遍的毛病,過去大多是提重物等原因引起,但醫師發現,下背痛有年輕化的現象,有一名才十四歲的國中少女因長時間坐在書桌前作功課及打電腦發生下背痛。醫師提醒,長時間坐著的學生、上班族,最好半小時就起來活動一下。
收治這名國中生的林口長庚醫院復健科主治醫師陳柏旭說,該少女一周前出現背部疼痛、右腳抽筋、疼痛,到門診時坐輪椅由爸媽推進來,檢查發現,原來是長時間坐在書桌前讀書、上網,且一坐就好幾個小時,導致下背痛。復健後症狀已改善。

坐半小時須起身

陳柏旭指出,下背痛有年輕化的現象,但十幾歲就出現下背痛並不常見。國泰醫 院物理治療組長簡文仁說,在臨床上已看到很多有下背痛的大學生,現在的年輕人喜歡上網,有的還趴在桌上打好幾小時的電玩,長期坐姿不良,更易出現下背痛。 提醒民眾不要長時間坐著不動,最好半小時就起身。
陳柏旭說,下背痛的原因很多,像是提重物、長時間坐著等,導致下背軟組織的急慢性傷害、韌帶拉傷、椎間盤突出等。目前可用藥物、復健等方法改善。

預防下背痛注意事項

.打電腦、坐著辦公時,最好半小時就起身動一動
.必須久坐時,可將腰動一動、屁股挪一下,變化姿勢,可減輕對下背的壓迫
.注意桌椅適當的高度,坐時應維持肩膀放鬆、上肢靠近身體的姿勢
.有下背痛時可熱敷,緩解疼痛感
資料來源:簡文仁物理治療師、陳柏旭醫師

要注意啊,現在的人!!工作誰不用電腦的
誰不用電腦種菜偷菜的?

身體健康要緊啊!!
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2009年10月22日 星期四

見證真愛! 短暫的生命, 開心的過!

這才是真愛啊~

短暫的生命, 開心的過!

照片中的女孩是凱蒂,21歲。而躺在隔壁的是她的未婚夫尼克,23歲。
這張照片是他們在美國舉行婚禮不久後,與2005年1月11日所拍的。
凱蒂患有末期癌症,一天需要花上幾個小時做治療。
尼克在照片裡正在等待著她完成化療。


儘管肉體多麼的疼痛、內臟逐漸地衰弱和打了多少的嗎啡針,

凱蒂還是堅持舉行婚禮、甚至著手籌備。
她的婚紗因為體重不斷地減輕需要一改再改。


在婚禮排隊上出現的格格不入的物品,就是凱蒂在典禮以及等待的時候所使用的氧氣桶。
照片裡的另一對男女就是尼克的父母。他們很高興看到兒子娶到了他高中時代的情人。


凱蒂坐著輪椅戴著氧氣管,聽著她的丈夫和她的朋友為她高歌一曲。


在等待的時候,凱蒂需要間接的休息。她肉體上的疼痛不允許她長時間站著。


凱蒂在她婚禮後5天便去世了。

看著一個病得這麼重而且虛弱的女生帶著幸福的笑容結婚
讓我們不禁感歎...愛情是多麼的奇妙啊! 被愛情滋潤的女人就是幸福洋溢,儘管它是如此的短暫。

因為夕陽伴,我不怕夜來,眨眼如此從容,有你已足夠;
因為近港灣,我心不徘徊,相視如此溫暖,有愛就足夠!




人生短暫
盡可能讓自己和他人開心的過

打破常規
寬恕與諒解尊重當事人的選擇

吻得熱情 愛得真切

時常歡笑
不斷地微笑


體認生命的無常
只要還活著

我們就應該面帶笑容心存感激!


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2009年10月20日 星期二

走路或手腳行動不便的病友照過來

日前聯絡上Bioness這家公司, 這是一家能夠讓MS病患雙腳順利走路和雙手自如活動的醫療器材公司
請參考之前我的文章和其相關連結:

http://multiplesclerosis-beta2kimo.blogspot.com/search/label/Bioness%20%E8%83%BD%E8%AE%93%E4%BA%BA%E8%B5%B0%E8%B7%AF%E7%9A%84%E8%A3%9D%E7%BD%AE

有一個想法, 看看是否有病友想要和我一起去嘗試這一項裝置的, 或許可以揪團一同出去(亞洲沒有據點, 要也要一兩年後). 想要的人就留個言或寄mail給我吧!!

NESS L300 Foot Drop System and MS

We often hear from people with MS who are able to use the device that it is nothing short of life changing! They are enjoying an increase in mobility1 and social participation2.

NESS L300 users like the fact that the device is lightweight and attractive, not heavy and cumbersome like an AFO. They also like the quick results they see and how easy it is to use.* The NESS L300's unique Gait Sensor means that a wearer may be able to walk on uneven surfaces and go up and down the stairs faster and with greater confidence.

The NESS L300 is designed to help correct foot drop by stimulating the nerves in the leg that lift the toes with a technology called Functional Electronic Stimulation or FES. While FES has been used therapeutically for years, the NESS L300 is one of the first devices to make it easy to apply and use in a home setting.

Lorrie - A Life Changing Experience... For the Good!*

Lorrie is a wife, mother, and grandmother who has Multiple Sclerosis.

Life before the NESS L300

"[My niece and nephew] would come to the house and they would want to go outside and play or go for a walk or something—my husband would take them. It was just too fatiguing for me to even think about doing that."

The AFO just wasn't right

[The AFO] helped prevent some of the falls, but I can remember opening the front door, going to step out, and just swinging out the door and landing in the bushes instead. Then it wasn’t fitting right because of atrophy."

Lori shows her doctor the NESS L300

"The L300, I saw it in a magazine, I went to the doctor and I said, ‘This is what I want.’ I had a normal appointment to go in for a checkup and I said to [the doctor], ‘This is the device that I had talked to you about that I had wanted.’ And I started to explaining it to her and showing her how it worked. Well she got so excited."

Life with the NESS L300

"The L300 has changed my life. My husband says he can walk with me now. Before, he was walking six feet ahead of me. Now we can walk together, whether it be in the mall, whether it be just outside taking a walk. You don’t have the fatigue from swinging the leg."




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體重再度下降(想減肥的人照過來)

經過了一個月,回到神內門診報到, 順便量體重, 發現:

我又瘦了2公斤(在這4個星期中)

所以在這8個星期內, 總共瘦了4公斤, 也就是說: 我目前的體重以一個月2公斤的速度在下降

從今年初至今, 我的體重已經從63降到55kg.....哇 真是了不起, 有誰瘦身可以像我這樣的?
不過好像只有一位男性MS病友有和我一樣的狀況

其他都沒聽說體重有下降的.....

想減肥的人照過來, 我可以分享我的經驗, 第一要先得到這種病才有機會喔 ^^

然後,進一步做飲食的控制. 就可以達成了

看來, 是要休息一段時間的時候到了~
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2009年10月17日 星期六

德國拍到免疫細胞入侵神經系統過程

德國拍到免疫細胞入侵神經系統過程

新華社倫敦10月14日電
人體神經組織擁有一層嚴密的保護膜,但是一些免疫細胞仍能穿透保護膜進入神經系統,有時還會因此引發疾病。德國科研人員日前報告說,他們利用新技術拍攝到免疫細胞入侵神經系統的全過程。

  德國馬克斯‧普朗克神經生物學研究所等機構的科研人員在英國《自然》雜誌網站上報告說,他們用綠色熒光蛋白為一種免疫細胞──T細胞打上標記,將其放進實驗鼠的血管內,爾後利用『雙光子成像』技術,跟蹤被標記細胞在實驗鼠機體內的運動過程。

   研究人員發現,T細胞入侵神經系統的過程可分為幾個步驟:首先它會在血管中游動,並且可以逆血流方向運動,檢查血管內壁是否有異物。然後它能穿過血管與 神經系統交界處的隔離膜(或者是所謂的血腦屏障),並檢查血管外壁和神經膜等組織。最後,當T細胞遇到一種吞噬細胞時,就會發生不正常的免疫反應,攻擊神經系統,造成多發性硬化症 等疾病。

  『雙光子成像』技術即通過探測樣品經雙光子激發後發出的熒光,實現樣品三維成像的技術。參與上述實驗的研究者說,用該技術拍攝到生動直觀的T細胞活動影像,不僅糾正了過去對這方面的一些錯誤認識,而且大大增進了對相

不過到底是哪一種吞噬細胞啊? 人的和老鼠的會不會不一樣呢? 真相將越來越大白~


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2009年10月16日 星期五

給自己好心情

給自己好心情

一些不錯的話

1.如果今天的你不能比昨天的你更喜歡自己, 那麼明天對你來說,又有什麼意義?


2.
多心
有時候,你難免多心。心眼一多,對許多小事就跟著過敏。 於是,別人多看你一眼,你便覺得他對你有敵意;別人少看你一眼,

你又認定是他故意 對你冷落。 多心的人註定活得辛苦,因為情緒太容易被別人的情緒所左右。多心的人總東想西想胡思亂想,結果是困在一團思緒的亂麻中,動彈不得。有時候,與其多心,不如少根筋。

MS的人多半多心敏感~

3.
你是一塊磁鐵
相不相信?其實你是一塊磁鐵。 當你身心愉稅、喜歡自己、對這個世界充滿善意,美好的東西就自然地被你所吸引。 相反的,當你悲觀、鬱悶、覺得什麼都不對勁,負面的一切也就相繼來報到了。 因為你是一塊磁鐵,吸引的是與你相關的東西,所以快樂的你就吸引讓你快樂的人事境,煩憂的你則吸引讓你煩憂的人事境。
幸運與厄運,在於你如何使用內在的磁力。這是信念的奧秘


4.
你今天心情好嗎?
你不說話,但眼底的神色已回答了一切。 那麼,就別讓自己繼續躲在心事重重的甲殼裡吧。「煩腦」這種煩人的東西是想出來的 啊,若是不想就不存在,你沒聽過這句話嗎?去喝一杯咖啡,買一件衣服,剪一種新髮型。去吃一筒冰淇淋,走一條街,看一場電影。去看一個老朋友,聊一回往事,數一晚星星。
讓自已好過的方法很多,而且善待自己是道德的。除非,你堅持躲在潮濕的甲殼裡更快樂。



5.
別太在意
他的吃相讓你討厭,但或許你說話的樣子也令他不悅。你不喜歡他穿衣的風格,說不定他也受不了你的髮型。他有他的缺點,你也有你的盲點。這世界上本來就不存在完美的人。沒有人可! 以百分之百地配合別人,也沒有人需要壓抑自己,只為了討人歡心。已經不是小學生了,你又何必搶著當風紀股長去注意別人是否肅靜?與其把時間浪費在不相干的人身上,不如用這寶貴的光陰來做對自己更有益處的事情。




6.
心亂
心亂的時候,你像一把音沒調準的吉他,撥出來的都是剌耳的不穩定和弦。
也許你正為了什麼暫時無法解決的事情發愁,或是為了還沒發生而可能發生的災難擔心,你不喜歡這心亂的感覺,卻又無法禁止漫天漫地的胡思亂想。於是你的心更亂,因為你深深地感到對自己的無能為力。我知道你的心正亂,但也請你相信,事情永遠不會像你所預想的那麼糟糕。許多時候,你太習慣自己嚇自己,? Y來只是徒然浪費了時間與力氣。心亂的時候,找一件能讓自己專心投入的事情來做吧!掃掃地,抹抹窗子,或是把堆在水槽裡的碗洗乾淨;當你整理了外在的秩序時,其實也就理清了內心的亂麻。或是深呼吸或運動吧~

7.
喜歡自己
你常常因為光陰易逝而恐慌,也常常因為荒廢歲月而不安;面對旁人的要求和自己的期望,你往往不知如何選擇,夾纏在公眾事物與私人情感之間,你覺得一事無成。於是,置身於紛亂的生活裡,你的心就陷溺如流沙了。快樂的秘訣之一,就是在有限的時間裡,選擇先做你喜歡的事情。只有在一樣樣地完成它們之後,你才會一日比一日更喜歡自己。親愛的,如果今天的你不能比昨天的你更喜歡自己,那麼明天對你來說,又有什麼意義?


8.
別做井底蛙
像一隻井底的青蛙,你抬頭看見的只是一小片天空。當這片天空出了太陽,你就以為全世界都發亮;當它下了雨,你又以為全世界都沒有光芒。井口的周圍就是你的世界的邊界,井口大的天空宰制了你的全部的心思。你沒有想到真正的世界其實是沒有邊界的,也不會知道在那個小天空之外還有個大天空。當你陷入某種人生僵局的時候,你就是這隻青蛙,侷限在潮濕的井底,看見的只是自己的痛苦。所以,你只能用力往上跳,跳出這口井,跳出僵局。然後,你會發現以前的世界何其小,未來的天地何其大。


9.
秋雨
秋雨從高高的雲端落下,洗盡堆積了一夏的塵埃。如果潮濕的天氣讓你有了欲淚的情緒,那就痛痛快快地大哭一場吧。哭泣其實不必有正當的藉口,一如大笑無需任何緣由。人 們總是讚美笑,卻不鼓勵哭,但一個不會哭的人就像從來不下雨的天空,只任乾燥的情緒壓抑堆積,不見淋漓活潑的水意。想笑就開心地笑,想哭就放心去哭,能笑也能哭,是對自己的慈悲。哭過的你將感到無限輕鬆,一如雨後的天空無限明淨。


10.
跟著因緣走
小時候,你曾經對別的小孩炫耀:看!我有你沒有。你有的可能是一只風車、一個洋娃娃或一支彩色筆。長大後,你卻開始羨慕你的朋友:唉!他有我沒有。別人有的可能是一分理想的工作、一樁受寵的感情或一種優渥的生活。孩子氣的炫耀是天真,成人式的羨慕卻不免幼稚了。親愛的,其實你也有很多寶貴的東西是別人沒有的呀!例如說,你可能有堅固的牙齒,當別人只能吃西瓜時,你卻能啃甘蔗;你可能有修長的手指,當別人只能吹口琴時,你 卻能彈鋼琴。也許當你羨慕著別人時,別人也在羨慕著你呢。每個人都是這世界上獨一無二的存在,沒有誰比誰更幸運,也沒有誰比誰更尊貴。人生在世,不過是跟著因緣走,而因緣向來是生滅無常的。所以,擁有無須歡喜,因為擁有就代表了有失去的可能;沒有也不必難過,因為沒有才有機會去獲得。在得失之間,無所謂好與壞。一切不過是跟著因緣走。保持一顆心的自由自在,輕輕鬆鬆跟著因緣走吧。當你能夠把世事無常看透,也就是你真正長大的時候。

不用再羨慕別人啦!!

11.
想想
想想,有什麼事,真的是你非完成不可的?有什麼目的,真的是你非達到不可的?有什麼人,真的是你非留戀不可的?你的心裡總是堆滿了理不清的願望,但是那些人那些事,對你來說真的那麼重要嗎?也許只是一時的迷障,也許只是因為不甘心。有些人有些事,於你的生命其實無益。就像電腦檔案有一定的容量,生命也有使用期限,你只能在有限的時間裡做有限的事, 到有限的地方,認識有限的人。所以,認真去做真正想做的事,也認真對待你真正喜愛的人,除此之外,就別再給自己多餘的負擔吧!


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最近出現小抽筋~

最近腳又有抽筋的跡象

嗯 這是警告自己要真的再適當地休息了.

很想放長假~

留職停薪??
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美國食物藥品管理局"喜歡"Acorda"的MS藥物: Fampridine

美國食物藥品管理局"喜歡"Acorda"的MS藥物: Fampridine

October 15, 2009, 8:38 AM ET

An experimental multiple sclerosis drug many not help most of the patients who take it, an FDA advisory panel said yesterday. But a benefit for a minority of patients was enough to convince the panel to vote in favor of fampridine-SR, Dow Jones Newswires reports.

美國食品藥物管理局諮詢委員會昨日以12比1的

Shares of Acorda Therapeutics, a small company that’s developing the drug, rose more than 40% in after-hours trading. As often happens when a small drugmaker is heavily dependent on a single, experimental drug, Acorda’s shares have been on a roller-coaster, rising and falling with the drug’s prospects.

In clinical trials, more than a third of patients who took the drug showed improvements in walking speed, compared with fewer than 10% of patients who took placebo. But as we noted just last week, FDA documents released ahead of yesterday’s meeting said the improvement in walking speed among some patients who took the drug was “of small magnitude and uncertain clinical significance.” That caused Acorda shares to fall more than 20% .

臨床證實, 比起服用安慰劑的病人, 超過1/3的MS病患服用了 fampridine之後, 能夠增進走路的速度.

Yesterday’s panel voted 12-1 that the drug “demonstrated substantial evidence of effectiveness … as a treatment to improve walking in patients with multiple sclerosis.” And the vote was 10-2 in favor that “there are conditions under which fampridine could be considered safe.” The FDA doesn’t have to follow the recommendations of its panels, but it usually does.

Biogen Idec, which also sells the multiple sclerosis drug Tysabri, has the rights to sell the drug outside the U.S.

又一新藥的出現, 繼續加油吧!!
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2009年10月11日 星期日

活出理念,正向思考!!

活出理念,正向思考!!

─活出理念─

人格特質有的是與生俱來,有的受家庭影響,也可由音樂薰陶。

有一項統計,O型和A型血型的人進行 五千公尺 賽跑,在中途,
O型的心想:「好棒喔!我已經跑三千公尺了。」
A型的心想:「唉!還有兩千公尺。」
其實,正面思考模式,可以慢慢培養

我時常在孩子用晚餐時,說笑話給他們聽,不但用餐氣氛良好,
又可胃口大增、幫助發育,當然菜色也要常變化,才能事半功倍。

當孩子不小心弄翻湯汁,我不會責備他們,
小時教他們如何處理善後,以後就會自己整理了。

有一次,孩子正在吃飯,我端了一大碗的湯,卻在餐桌上翻倒了
(平時我做事都很細心),此時,我對孩子說:
「今天很難得,媽媽把湯弄倒,如果買彩券一定中大獎。」
他們聽了都很高興,紛紛起來幫忙整理。

我在「心靈雞湯」這本書,看到一則故事:
有個媽媽,有天在公司,很不如意;
剛好那天,兒子在學校也很不愉快,
這位單親媽媽就對孩子說:
「為了慶祝今天的壞心情,我們去麥當勞。」
我想,這樣的母親教導出來的孩子,必定相當樂觀。

我在幾次重大手術之後,都能平安回家,我就跟朋友開玩笑說:
因為我在人間的功課還沒做完,上帝不讓我去天上報到。

在去年手術後,我行動不便,喪失許多機能,許多親友都為我難過,
我告訴他們:我的生病經驗豐富,這樣會更有愛心,以後才能去幫助別人

有一次,孩子在抱怨,為什麼要下雨。
我說:「下雨了,外面的樹可以免費洗澡,我們也不會熱,省下很多電費。」
後來就不再聽到孩子埋怨下雨了。
若能養成幽默的性格,不但能改變命運,也能讓身邊的人快樂,
亦能增進人際關係,何樂不為呢?

一起正面的思考吧!
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網路讀書會之三 : 賣命工作的誘惑-新經濟的矛盾與選擇5

網路讀書會之三 : 賣命工作的誘惑-新經濟的矛盾與選擇5

‧雙薪無性夫妻——DINS


一個主因是新經濟之下的新工作方式。
美國前勞工部長羅伯‧萊奇(RobertB.Reich)在«命工作的代價»一書中指出,科技與新工作型態使得家庭成員很難相聚在一起,社會學者甚至發明了「雙薪無性夫妻」(DINS,doubleincome,nosex)來形容這種下班之後累得什麼都不想做的夫妻。
主流的價值觀也讓現代夫妻把工作當作重心 好慘~
東海大學社工系教授彭懷真發現,這種想要過更好的物質生活的驅力,往往讓人們無法在工作與婚姻品質間作出好選擇。
「高品質的工作跟高品質的婚姻要付出的代價是一樣的。
這是一個選擇,你要高品質工作加上普通婚姻?還是普通工作加上高品質婚姻?」反問。
更令人驚愕與擔憂的是,工作取代了配偶,成為情感需求的來源。
心理諮商師菲麗普森(IlenePhilipson)在«我們嫁給了工作»一書中指出,愈來愈多人嫁給工作,工作給他們情感需求與人生渴望;生活以工作為重心,用成就感填補空虛,辦公室取代家庭的地位,好友往往是同事。
嫁給工作的人,精力在工作上耗盡,回到家,跟配偶沒有互動與交集,於是,感情不睦、隔閡感漸漸出現。
「沒辦法,公司的事情,我老公又聽不懂,如果要講一個小點,我還要解釋整個面,很煩,」李琦寧願跟同事分享工作上的心得。
她跟先生成長的方向不一樣,關心的議題不一樣,兩人的距離愈來愈大,「我同事跟我很瞭解,但是我老公一點都不瞭解我,」她覺得。
當家變成房子(house),而不是家庭(family),當最親近的人不再是配偶,而是工作的夥伴,當嫁給工作的上班族,懂得向上管理、專案管理,業績直線上升,回到家裡,與配偶的感情卻是直線下降,每下愈況

‧如何找到相同的頻率與韻律?

耳鼻喉科醫師黃國欽與皮膚科 醫師魏麗婷夫妻也面臨同樣的外在壓力,卻找到相處的頻率與韻律。
看診時間從早上9點鐘到晚上9點半的他們,關在各自的診間,燈號一亮,門開了,人們一個個進來訴說病情,日復一日,他倆的工作與生活既重複又封閉,而且因為科別不同,經驗無法互相分享,話題也缺乏交集。
為了克服問題,黃國欽與魏麗婷沿用談戀愛時互相寫信的招式,把想要講、不好意思講的話,寫在信上,上班前交給對方。
每個星期,兩人會看兩部到三部電影,而且,診所打烊後,才去看午夜場。
「我們本來就很喜歡講話,看了電影,就有共同的話題可以討論,也可以溝通很多對事情或人生的觀念,」黃國欽說。
他們的做法,與彭懷真的建議不謀而合。

夫妻情趣管理4原則

怎麼做好夫妻的情趣管理?
彭懷真建議,
第一個原則是:增加更多的溝通與協調
「把約會、相處的時間排在時間表裡,」他建議。
勤業眾信會計師事務所總裁魏永篤儘管工作再忙,每天都跟 太太散步一個小時。

第二個原則:有效分配時間
「把電視關掉就有時間了!」彭懷真指出,看電視不僅不能讓夫妻休養身心,而且被動地接受負面的訊息,夫妻可能會吵架。「我一直想要推動一個中華民國不看電視協會!」彭懷真認真的說。

第三個原則:做對方喜歡的事
比如太太陪先生看NBA球賽,先生看太太喜歡看的書,創造討論的話題。
彭懷真自己也是這個原則的奉行者。
他與太太討論出對方喜歡的活動,規劃好每天晚上一起從事,比如逛街、游泳、看電影、打桌球,活動的順序可以不同,但是每兩個星期一定要輪一次。
不過,彭懷真指出,如果真的不喜歡做對方喜歡的事,一定要適度的調整,找到最好的方式。

第四個原則:不要改變對方的習慣
工作的前提是改變,這是為了產生績效;但是生活的重點是相處,不應該強勢要對方改變,」他提醒,應該找出對方的節奏,增加相處的時間量,讓量變產生質變,提高婚姻的品質。
「有人說重質不重量,問題是,沒有量,哪裡會有質?」彭懷真質疑。
他提醒,情趣管理不可以操之過急或要求高標準,既然大家都是平凡人,就該過平凡的生活方式,「不需要best,只要better就好。有進步就是好的開始,」他說。

儘管自省與各種原則都可以增加夫妻的相處與互動,但是,美國前勞工部長羅伯‧萊奇(RobertB.Reich)在«命工作的代價»一書中還是語重心長地指出:
「要決定改變什麼,並且確實地執行才是最困難的事。」
看來,持續不斷的執行力正是夫妻情趣管理的癥結。

可見光有理念還不夠,需要活出那理念才行。很不錯ㄛ....

以上,和大家分享~
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