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!
本網誌設立的目的在於提供MS多發性硬化症的相關醫療資訊,並且以一過來人的身分分享自己發病過程和對抗這個罕見疾病的經驗和心路歷程. 希望我的個人經驗能夠讓同樣遭受這種疾病的人獲得身體上或者是心理上的幫助,而這將是我最大的快樂!! 我更希望這種病不要發生在正常的人身上,希望能夠藉由我的網誌來換醒更多人對於健康的重視!!
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."你能逆轉MS嗎? 有一位女性說: 可以的, 來看看他的說法
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來自水牛城神經影像中心 (都卜勒超音波檢驗)的回應
新式幹細胞治療法 硬化症青年手術後可走路
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。
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本計劃主持人:楊智超醫師 | 分機:65345 | 研究助理:衛聿柔 |
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諮詢電話 :(02) 23123456 轉65345 0966-315-010
| Email:bluejou@yahoo.com.tw |
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
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.
使用成人幹細胞成功治療多發性硬化症 Multiple Sclerosis Treatment with Adult Stem Cells
妻罹癌或多發性硬化症 2成夫離婚
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!!幹細胞治療之後 MS患者可以走路了
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。
CTEVD(組合和顱外靜脈經顱都卜勒) 檢驗徵求MS病患志願者
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。
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! |
一部介紹多發性硬化症的電影: "迎戰轉捩點"
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
最新消息:美國FDA 駁回 Merk藥廠的MS 藥物申請
〔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及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。
長期打嗝 恐罹多發性硬化症
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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. |
台灣人維生素D嚴重不足
罕見十年 邀您共同見證~
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.
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
美多發性硬化研究新曙光 血管阻塞倒果為因
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!!
重大的醫學發現 : MS的原因找到了?!
保險對我們病友和家人的重要性
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~當兩性關係遇上重大疾病時
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」, |
十四年前因車禍造成下半身癱瘓的許豈逢,
勞委會表示,這項計畫從今年三月上線,到十月底止,
由於試辦成效良好,勞委會主委王如玄呼籲企業多加利用,
提供給行動不便的病友謀生的機會,也是政府的美意, 讚!
居家值機計畫 身障就業新模式
“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!!
新藥給了MS病人新的希望
心情點播:心中仍然有一份對伴侶的希望之火
好文章分享
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)
中國科研人員找到多發性硬化病潛在藥靶
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。
少女久坐打電腦 下背痛到坐輪椅
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!
見證真愛! 短暫的生命, 開心的過!
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 is a wife, mother, and grandmother who has Multiple Sclerosis.
"[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] 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."
"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."
"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."
走路或手腳行動不便的病友照過來
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~
德國拍到免疫細胞入侵神經系統過程
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,
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」
讓自已好過的方法很多,而且善待自己是道德的。除非,
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。
6.心亂
心亂的時候,你像一把音沒調準的吉他,
也許你正為了什麼暫時無法解決的事情發愁,
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;
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。
9.秋雨
秋雨從高高的雲端落下,洗盡堆積了一夏的塵埃。
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。
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,
給自己好心情
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!!美國食物藥品管理局"喜歡"Acorda"的MS藥物: Fampridine
活出理念,正向思考!!
網路讀書會之三 : 賣命工作的誘惑-新經濟的矛盾與選擇5