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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