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

2010年5月13日 星期四

印度也提供了CCSVI的手術

CCSVI Surgery for Multiple Sclerosis in India

在印度的Medical Tourism Corporation提供了全面,完善,可以負擔(USD6500)的手術套餐供給需要的MS病患。

Dr Zamboni’s Liberation Procedure for treatment of multiple sclerosis is a new but increasingly popular approach. Medical Tourism Corporation’s India Liberation surgery package is comprehensive, affordable, and makes no compromises.

(I-Newswire) May 12, 2010 - Liberation procedure for Multiple sclerosis in India is bringing new hope to patients suffering from a disease that was previously thought incurable. It is being facilitated by Medical Tourism Corporation, a popular provider of medical tourism services from Texas, US.

Also known as Zamboni Procedure India (http://www.medicaltourismco.com/neurosurgery/venous-angioplasty-stenting-abroad.php), surgery for multiple sclerosis is a revolutionary new approach to treating the disease. Dr Paolo Zamboni from Italy is credited with coming up with the idea that multiple sclerosis was probably a dysfunction of drainage of the veins, a condition which he called Chronic Cerebrospinal Venous Insufficiency (CCSVI). Hence, he argued that endovascular surgery would restore flow in these vessels and lessen MS symptoms. As his concept was to free up the flow of blood in cervical and thoracic veins, the procedure came to be popularly known as Liberation procedure.

Initial trial results have been very satisfactory and Dr Zamboni’s theory is now being actively studied by Canadian and US researchers. CCSVI procedure in India is being offered by experienced and highly qualified neuroradiologists (endovascular neurosurgeons) who are considered among the best in the country.

Medical Tourism Corporation provides all information related to multiple sclerosis surgery abroad and the choices available to you. Its India package for multiple sclerosis is extremely affordable and covers 5 days stay in a hospital private room where a companion can stay with the patient, Venous Angioplasty (Liberation Procedure), nursing care, procedure fee, tests like a post op jugular Doppler and 2 neurology consults, patient's food and airport pick up and drop.

該機構提供了5天可供家屬陪伴的住院單人房,整個手術過程,護士照顧服務,手術後的靜脈超音波掃描確認,包含了病人的膳食以及機場接送服務等。

Apart from the hospital stay, the patient has to stay in a nearby hotel for three more days for post-operative checks. The hotel stay is at the cost of the patient.

The hospitals in India where the surgery is offered have the latest cutting-edge equipment like flat panel Biplane DSA (digital subtraction laboratory) that provides ultrahigh resolution (2048 matrix) of cranial (brain) and spinal blood vessels. This unit is one of the most advanced units installed in this part of the world.

Its features include biplane technology, that is, its two C arms help in visualization in two planes simultaneously; flat-panel technology which achieves high-resolution images with much less radiation exposure; 3D technology, which helps in precise assessment of the vascular anatomy and pathology; and advanced DynaCT, which has an angiographic suite built in a CT scan-like facility for early detection of any complication during the procedure.

To qualify for the surgery, the patient is evaluated first by using Doppler Ultrasound and MR Venogram for Cranial Venous putflow pattern. If there are indications of abnormality then further transfemoral venographic study is also required. Treatment is then done by angioplasty (opening of narrowed or blocked veins) of the stenosed veins and placing of stents if required.

Multiple sclerosis surgery in India is an increasingly attractive option for patients in an otherwise bleak scenario. The surgery may not make people in wheelchairs get up and walk, but it has been known to stop further degeneration or disability.

看起來也相當具有吸引力呢。

Venous Angioplasty Stenting for Multiple Sclerosis (Liberation Procedure)

Venous angioplasty stenting for multiple sclerosis (Liberation Procedure) is the most advanced procedure for the treatment of multiple sclerosis (MS). CCSVI or Chronic cerebro-spinal venous insufficiency syndrome is considered to be primary cause of multiple sclerosis disease. CCSVI syndrome is caused due to insufficient blood flow between central nervous system and heart through cervical and thoracic veins.

Venous angioplasty stenting for multiple sclerosis 手術室圖片

Diagnosis and treatment:

Patient is evaluated first using Doppler Ultrasound and MR Venogram for Cranial Venous putflow pattern. If there are indications of abnormality then further transfemoral venographic study is also required. Treatment is then done by angioplasty (opening of narrowed or blocked veins) of the stenosed veins and placing of stents if required.

Venous angioplasty stenting  abroad病房圖片

Venous angioplasty stenting for multiple sclerosis Costs and Packages:

The cost of the Liberation procedure is 6500 USD (with one stent) and patient will require a hospital stay for 5 days. Post discharge patient will require 3 days hotel stay before flying back home.

該套裝行程需要6500USD~約20萬台幣。還是不便宜,

The package cost includes 5 days stay in a hospital private room where a companion can stay with the patient, Venous Angioplasty (Liberation Procedure), nursing care, procedure fee, tests like post operation jugular Doppler, 2 neurology consults, patient's food, airport pick up and drop etc.



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2010年5月11日 星期二

MRV的結果

MRV結果 初步:

在注射顯影劑後的影像當中發現:

1. 兩側的靜脈(Jugular vein)都有窄化

2. 其中之一甚至有阻塞的現象

和我的直覺相同,也驗證了Dr.Zamboni的結果。

看來靜脈擴張手術是 勢在必行了!

下一步,再做更精確的檢驗?還是?
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又一位國外的MS病友手術後的經驗分享

My Liberation Adventure

謝謝病友 Iris對 Lucky Lady的BLOG做了完美的詮釋~

3 月4號 我動完了手術 依顯影顯示我的血管是有擴大的(75%) 然後我不會感覺那邊有個東西存在

3月9號 我覺得有點小改善 我以前發紫的右腳變成身粉紅色(我想是血液循環有變好一點) 還有我現在可以站著切菜15-20分鐘 以前我通常都是做著做這些事

3月12號 他提到到他雙腳已經是粉紅色的。 提到 Dr. Zamboni 推論
鐵質是免疫系統攻擊的目標 然後我之前的檢查顯示我手術前鐵質累積在我的腦內比較多

3月17號 我有溫暖的腳趾跟手指了!而且平衡也有了改善
(當 中有提到另外一位病人也做了手術 他已經變冷加變紫好幾年的腳現在是溫暖而且是正常的顏色)

3月22號 1.手指跟腳趾還是溫暖的 2.平衡還是有改善的(有在做復健 建議大家也去做復健)3.我吃東西不會噎到了 手術前我一個禮拜會噎到幾次

3月26號 我比以前開郎多了(我覺得這也是大改善 心情好進步得會更快吧XD)
3 月30號 好像玩太兇 後來平衡跟走路都變差甚至更容易累但休息了一兩天有好了(重點是不能把自己累壞 要懂得量力而為)
4 月6號 1.手指跟腳趾還是溫暖的2.平衡沒變差3.疲勞問題有變好一點 4. 34天內只有噎到一次5.抽筋問題沒改善其他的也沒變 他還是需要拿拐杖輔助

4月16號 1.手指跟腳趾還是溫暖的2.沒噎到3.比較沒有認知疲勞4.平衡變好但雙腳還是很虛弱

4 月29號 他可以騎腳踏車連續8分鐘 以前大概3-5分鐘就累了

5月5號 他現在可以騎十分鐘

以上 大有改善!
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2010年5月9日 星期日

最近天氣多變化,請病友們注意別感冒了

最近天氣多變化,季節交替,冷熱變換,請病友們注意別感冒了

以免進一步誘發。

給大家的小叮嚀~
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另一位國外的MS病友在執行靜脈擴張手術後的經驗分享

先附上她的BLOG 連結(內有她本人手術前後的平衡感測試影片,以及她的MRV的影像)
其中影片當中做了平衡感測試的最佳示範!每個病友自己可以試試看!
MRV Scan from False Creek.

My CCSVI Liberation Procedure

我等待的過程,是要改變我的生活。
我前往索非亞,保加利亞的靜脈擴張手術治療 4月28日被對待 Grozdinski博士和他的團隊在德田醫院。

我 的症狀,我現在正在遭受(左邊)。我的改進(右邊):))

1。在我右手麻木的手腳。 1.Hands ....一點點的感覺已經回來了。我打字速度可以更快。他們工作的更好:)
2。視力問題。 2。我的眼睛已經大為改善,但仍然不吃藥的一半多。
3。走路困難。 3。我的腳不再觸發器進行到一邊,但我仍然有肌肉緊張和有點痛。雖然改進。
4。 疲勞。 4。我的頭已不再是在一個霧,我有一點更多的精力...仍在恢復!
5。肌肉無力 5。慢慢地恢復了一點力氣。
6。膀胱問題。 6。改善。
7。頭痛 /偏頭痛。 7。沒有像我以前每日頭痛。
8。平衡問題。 8。現在幾乎是完美的平衡 !!!!!!!
9。 冷的手和腳。 9。手和腳冷,但仍然沒有得到只要。
10。抑鬱症/情緒波動。 10。給我一些時間。
11 ..言猶在耳。 11。似乎並不壞,因為它被視為一次了。
12。肌肉疼痛/僵硬。 12。一些改善。!
13。慢詞召回。 13。提高
14。我不能忘記熱敏感.... 14。我終於能夠在英國首次泡溫泉了!!!!!!! :)))

看到越來越多的國外病友在手術前後的改變的例子,看到了國內這麼多與MS搏鬥的勇者們,何不試試看呢?
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又一位不輕易向命運低頭的MSer


2010/05/09 聯合報
多發性硬化症患者郭惠恩,小時因病導致近盲,憑些微視力學唱、畫畫;不料,中年病症再來侵襲,讓她癱瘓,也失去視覺、嗅覺、味覺和觸覺,她的妹妹郭 臨恩從小就是她的「導盲犬」,兩人共同向多發性硬化症纏鬥幾十年,仍不低頭,並以「生命如此豐盛」一書,寫出姊姊和生命搏鬥的故事。

為了寫出姊姊艱辛一生,郭臨恩花了三個月,將自己沈浸在回憶、淚水與電腦鍵盤,新書在昨天發表,被視為有如現代版「瞎眼得見、癱子得醫」見證。

四十二年前某天早上,年僅七歲的郭惠恩跟爸爸說:「我什麼都看不見了!」身為牧師的爸爸初期以為是小孩厭學的藉口,但後來發覺問題嚴重,遍尋醫師,答案都 是:「失明了,但查不出原因,帶回家吧!」

郭惠恩透過蔣夫人宋美齡資助,到日本醫治,恢復少許視力,媽媽擔心她長大無法謀生,想辦法教她學唱,和妹妹彈琴伴奏「雙人組」,在台灣軍事院校巡迴一系列 音樂會。

後來郭家移民紐約,郭惠恩和家人在地鐵站經營小吃店,即使大雪紛飛,為了熟客照樣開店,她憑僅存光感,拜現代派畫家蕭勤為師畫畫。不料,兩年前,多發性硬化症發作,醫師一度發出病危通知。

「像我這樣的人,以後還能做什麼呢?」郭惠恩生病後,曾問伊甸基金會前董事長、醫師王剴鏘,王告訴她:「妳可以分享妳生病的經驗,成為別人的幫助和祝福。」

郭惠恩接受台北醫學大學附設醫院團隊治療,主治醫師康峻宏跟她解釋,這個病是身體免疫系統攻擊神經,就像電線失去絕緣外皮,會漏電走火,神經沒有髓鞘,無 法傳導,所以郭才會癱瘓,夜晚因神經痛難以入眠,甚至膀胱得靠尿管解尿。

她也跟醫師說:「我會努力的,其他的事就拜託你了!」常認真復健好幾周,才做到正常人眼中的一個小動作,毫不氣餒的進行一年多,現已可拿柺杖走路,且不用 靠尿管如廁。


嗯,而我也正和惠恩姐一樣,做著和他相同的事,希望自己的經驗能夠成為別人的幫助,更希望成為未患此病人的警惕和警思!
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2010年5月8日 星期六

驚人的數據!給健康的人警惕!

無意當中,看到之前從醫院領藥留下的藥袋

隨便估一估,發現:
從2005年至今

大發作: 4次

次發作:約3次

小發作(急診):約6次

類固醇注射計量:約 10000 mg

類固醇口服計量:平均一天6~8 mg (total: 4380~5840 mg)

Rebif注射計量 : 22 mg x 33 = 66 mg

其他服用的軟便劑,鎮定安眠劑,肌肉鬆弛劑,抗經欒藥物等就不在話下

體重由原本的65kg 下降至現在的 53kg

每天約有至少8~10次的便意,每次約莫花至少20分鐘不等的時間在排空腹部內的氣體或廢物(因為自律神經已受損,腸胃蠕動已大不如前),也因此每天用餐完後也有將近2~3小時會處於一種一直打飽嗝的情形下(感覺自己很像隻青蛙)。

每天晚上睡眠平均中斷2~3次(在已經服用鎮定安眠劑的情形下),睡眠品質依舊無法獲得有效的改善,所以要讓神經恢復的狀態也有限。

使用的紙尿褲由只要出門就會備用一件(身上穿一件)至今減為一件。

下肢的緊繃程度依舊,麻,灼熱,刺痛感依舊,隨著氣候溫度變化,睡眠的好壞而有所影響。

其實,許多病友的數據並不亞於我,病友們對此文就無需做負面的聯想。

寫這文主要的目的是希望健康的人更能夠注意自己的身體
看到以上的數據應該會有所警惕和自覺,若不想要遭受這樣的結果,請好好關注自己的身體!

所以對於氣球擴張術有所期待

無論如何,將以平常心來面對任何的結果,身心平衡才是我真正要去學習的!
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祝福全天下的母親,母親節快樂

祝福全天下的母親,母親節快樂!

特別給病友的母親,或是身為人母的病友,也給我的母親。


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英國用骨髓幹細胞治療多發性硬化症試驗見成效_新華網

英國用骨髓幹細胞治療多發性硬化症試驗見成效_國際頻道_新華網

2010年05月07日
新華網倫敦5月6日電(記者黃堃)英國研究人員日前報告說,他們利用骨髓幹細胞治療多發性硬化症的試驗取得成效, 病人沒有出現不良反應,症狀也顯示出改善跡象。

  英國布裏斯托爾大學等機構研究人員在新一期美國《臨床藥理學與治療學》雜志上報告說,他們對6名多發性硬化症患者進行了這項試驗。研究人員在病 人麻醉狀況下抽取他們的骨髓幹細胞,經過處理後,注射到病人的靜脈中。隨後一年的觀察顯示,病人沒有出現嚴重的不良反應,而多發性硬化症的症狀也有所改 善。

  領導研究的布裏斯托爾大學教授尼爾‧斯科爾丁說,試驗結果令人振奮,這一療法的安全性得到證實。在療效方面,雖然相關分析仍在進行中,但相信是 注入靜脈中的幹細胞在保護神經係統和免疫調節方面發揮了作用,使病人症狀出現改善。他表示,接下來將開展大規模試驗,進一步確認這一療法的效果。

  多發性硬化症是一種神經係統疾病,患者自身免疫細胞會錯誤攻擊神經元髓鞘,造成患者出現視覺障礙、肌肉無力等症狀。目前還不清楚其具體病因,也 還缺乏有效的治療手段。

原文如下:

Bone marrow stem cell therapy offers hope to multiple sclerosis patients

The research team, led by Neil Scolding, Burden Professor of Clinical Neurosciences for the University of Bristol and North Bristol NHS Trust, completed the trial in patients with MS to begin translating the findings from the laboratory to the clinic.


The Bristol team report on this pioneering trial in an article published online in Clinical Pharmacology and Therapeutics.

The paper, 'Safety and feasibility of autologous bone marrow cellular therapy in relapsing-progressive multiple sclerosis' was performed at the Institute of Clinical Neurosciences, Frenchay Hospital, Bristol and the Bristol Haematology and Oncology Centre.

The study explored the safety and feasibility of cell therapy in patients with MS. Participants had a general anaesthetic during which bone marrow was harvested. The marrow cells were filtered and prepared so that they could be injected into the patient's vein later the same day.

The procedure was well tolerated and the participants were followed up for a year. No serious adverse effects were encountered. The results of clinical scores were consistent with stable disease. The results of neurophysiological tests raised the possibility of benefit.

Professor Neil Scolding said: "We are encouraged by the results of this early study. The safety data are reassuring and the suggestion of benefit tantalising. A larger study is required to assess the effectiveness of bone marrow cellular therapy in treating MS. We are hopeful that recruitment to this phase 2/3 study may begin towards the end of this year.

"Research into the underlying mechanisms is ongoing and vital, in order to build on these results. We believe that stem cells mobilised from the marrow to the blood are responsible, and that they help improve disease in several ways, including neuroprotection and immune modulation."

對於其他治療的方法(成人幹細胞療法)也證有許多不同的進展,是自救的方法之一。

也是另大家值得期待的!

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2010年5月6日 星期四

為了爭取實驗性的手術,加拿大MS病患上街聲援遊行CBC News - Canada

為了爭取實驗性的手術,加拿大MS病患上街聲援遊行
CBC News - Canada - MS patients rally for experimental treatment(原始連結)
北美加拿大掀起一股浪潮!
Canadians with multiple sclerosis appear on Parliament Hill in  Ottawa as part of nationwide rallies to demand access to an experimental  treatment.
Canadians with multiple sclerosis appear on Parliament Hill in Ottawa as part of nationwide rallies to demand access to an experimental treatment.
(Robyn Burns/CBC)

Canadians with multiple sclerosis rallied across the country Wednesday to demand access to a controversial procedure not available in Canada or covered by provincial health insurance policies.

The procedure, developed by Italian researcher Dr. Paolo Zamboni, involves angioplasty to help ease the flow in neck veins of blood from the brain to the heart. Zamboni believes narrowed or blocked veins force blood to move backwards or reflux back into the brain and spine, causing damage.

He's termed the condition chronic cerebrospinal venous insufficiency, or CCSVI.

Rallies were planned for Halifax, Ottawa, Toronto, Regina, Edmonton, Vancouver, Victoria and elsewhere. 超過7個城市都有相對的聲援遊行活動

"With this kind of an illness, there isn't time for them to take three years to find out something," said Jennifer Noriega of Edmonton, a 38-year-old mother of two who has been living with MS for 11 years.

Multiple sclerosis patients and their supporters rally in Halifax  for funding for a new treatment.
Multiple sclerosis patients and their supporters rally in Halifax for funding for a new treatment.
(Jean Laroche/CBC)

Noriega, who can no longer walk, tried many different medications, including chemotherapy drugs, and now plans to travel to Bulgaria for the treatment.

"The risk might be that it works and then three months later it doesn't work," Noriega said. "But at least I'll have those three months."

More than 20 Canadians travelled to a clinic in Poland between February and April for the treatment.

今年2月到4月之間,有超過20個加拿大MS ers 遠赴波蘭動手術

Many MS specialists say Zamboni's procedure is experimental at best and could be dangerous.

Studies are underway to show how common CCSVI is in MS patients, those with other neurological conditions and healthy people, as well as to explore its potential role as a major risk factor in MS.

But despite the specialists' hesitation, some Canadian patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.

"I've been fixed," Steve Garvie, 53, told the crowd gathered at Queen's Park in Toronto. Garvie was one of five people who had the procedure at Royal Victoria Hospital in Barrie before the surgeon voluntarily stopped.

"What they're doing is criminal," Garvie added in an interview. "Every person that wants the operation should have it."

About 150 people gather at Queen's Park in Toronto to demand that  multiple sclerosis patients get access to a controversial new surgical  treatment.

About 150 people gather at Queen's Park in Toronto to demand that multiple sclerosis patients get access to a controversial new surgical treatment. (Mike Crawley/CBC)

"With any new treatment, whether it's drugs or technology, we need to ensure that it is thoroughly researched before it is approved for use," said Andy Weiler, a spokesperson for Alberta Health. "It needs to be an evidence-based decision that it is a safe and effective treatment."

Likewise, Nova Scotia's Minister of Health, Maureen MacDonald, met with protest organizers in Halifax for about 30 minutes on Wednesday but was not swayed by their arguments.

"We still don't know what the risks or the evidence are of the treatment," MacDonald said. "At this stage, it would be premature to have kind of a mass testing process for a treatment that is still unproven."

MacDonald said no other province is funding this kind of testing or treatment for MS.

$10 M in federal funding sought

In a release Wednesday, the Multiple Sclerosis Society of Canada called on the federal government to provide $10 million for research into CCSVI and MS.

The MS Society proposes that the $10 million be appropriated to the budget of the Canadian Institutes of Health Research and earmarked for CCSVI research.

MS Society representatives were to meet with MPs in Ottawa on Wednesday and Thursday to discuss other major issues:

  • Creating a nationwide income security program for people affected by MS that would replace what the society calls "the current hodgepodge of disability pensions, social assistance programs and tax credits, some of which cannibalize each other, resulting in less money for people with disabilities."
  • Increasing funding for health research with a focus on "innovative health research that can be translated rapidly into therapies that can benefit people with MS and other chronic conditions," including research into CCSVI.

Last month in Toronto, Zamboni and his collaborator, Dr. Robert Zivadinov, associate professor of neurology at State University of New York at Buffalo, cautioned people with multiple sclerosis to not rush to seek out the surgical procedure to unblock veins unless it was through official clinical studies.


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2010年5月5日 星期三

英國也加入了CCSVI的行列

CCSVI - A Major Breakthrough in the treatment of MS
英國的London and Glasgow也動起來了

he radical new theory of venous drainage being a major contributory factor in MS could be one of the greatest breakthroughs in the history of medicine. Dr Paulo Zamboni’s discovery that a large proportion of MS patients have blocked jugular and azygous veins, what he terms Chronic Cerebrospinal Venous Insufficiency (CCSVI), opens up an entirely new way of thinking about the disease. Zamboni has published two landmark papers in 2009; the first describing the condition and the second showing the effects of the “liberation” treatment on 65 patients. Although these early results are encouraging, supporting research is needed before we can be sure that this is a major factor in MS. A major confirmatory study of 500 patients in the University of Buffalo, New York is due to present its findings in the near future but early indications are that this supports Zamboni’s hypothesis.

The implications of this new finding are huge, especially for Scotland which has by far the greatest incidence of MS in the world. Scientists think that the CCSVI abnormalities precede the onset of neurological symptoms. It may be possible in the future to screen first degree relatives of MS patients to identify and treat preclinical CCSVI. This is a truly remarkable breakthrough. It also makes sense of some of the previously unexplained findings in MS. The fact that lesions are centered round small veins fits this new theory. The beneficial impact of vitamin D, antioxidants and omega 3 also fits the CCSVI hypothesis. Vitamin D interacts with over 2,000 genes in the body and has a marked impact on vein pathology. Deep venous thrombosis is 50% more likely in the winter months and low levels are associated with increased inflammation in veins.

Glasgow Health Solutions is actively seeking to offer scanning for CCSVI in the UK in 2010 in both London and Glasgow. The Doppler ultrasound scan required to show the CCSVI abnormalities has been specially adapted and requires specialist training from Dr Zamboni and his team. It is vital to work with the recognised specialists in this field and we hope to have an ultrasound technician trained by Dr Zamboni later this year. The cost of the scans in the UK is still to be finalised but should be around £450. We are also liasing with intervention radiologists to develop treatment centres around the UK. If you wish to register your interest and be kept informed of these developments you can register your interest on our web site.

Venous Health – it now appears to be vital in MS to keep veins healthy and reduce the possibility of narrowing and blockage. One of the most useful treatments of varicose veins is an antioxidant complex – Daflon. This a flavanoid and several research projects show that it improves varicose veins and varicose ulcers. Other flavanoids have also been tested with pycnogenol ( pine bark extract) being more effective that Daflon.

Vitamin D has a major role in the development of vein inflammation and is also a major factor in the development of venous hypertension. The inflammatory process in veins is similar to that in the development of plaques in arteries and may explain the efficacy of omega 3 fish oils in improving outcomes in MS. In addition to the surgical “liberation” procedure, it makes sense to ensure all nutritional factors are optimised to reduce vein inflammation. Future research should also consider these factors including checking vitamin D and omega 3 levels in addition to regular antioxidant use.

Quote from Gianfranco Campalani (sent to Dr Tom Gilhooly in February 2010)

" I am 64 and I was diagnosed with MS in 1986. I have being working full-time as a consultant cardiac surgeon in Belfast for the last 17 years. I met Dr Zamboni in my home town of Ferrara over three years ago and, following a Doppler study, I underwent angioplasty of both jugular veins by his team with significant improvement of my condition. Last Summer I noticed a slight deterioration and a Doppler study in Ferrara revealed re-occurrence of the narrowing of the jugular veins. I underwent a second liberation procedure in Belfast last October, with consequent improvement. For the last three years I have been campaigning in favour of the theory of CCSVI amongst colleagues in my hospital with no avail. I believe that the medical establishment has to wait for further evidence to be produced before accepting this new and revolutionary approach to the understanding and the treatment of MS".

一位64歲的MS病患,做了兩次靜脈擴張術,皆有進步。 對一位年紀如此大的人而言,願意做這樣的手術只表示一件事:
停止惡化,回覆原本的健康是刻不容緩的事!
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2010年5月2日 星期日

多發性硬化症與基因的關係

長久以來,科學家和醫學界也一直存此種懷疑。但是目前仍然沒有答案。仍存在有一定的反證,請見目前最新的報導:
翻譯新聞如後,

Looking at Multiple Sclerosis DNA for Clues

Saturday May 1, 2010

A recent study published in the April 28th issue of Nature is befuddling to those looking for answers about multiple sclerosis (MS) on the genetic level.

Scientists recruited three pairs of MS discordant identical twins (one of each pair had MS and one did not) to provide samples of DNA. The researchers then sequenced the entire genome for each of the participants - 2.8 billion "base pairs" for each one, to be exact - and compared the twins' DNA to one another.

Guess what they found? No difference in the DNA. None at all.

The scientists even conducted a very detailed investigation of immune cells, as MS is though by most experts to be an autoimmune disease, basically sequencing those and looking for differences. Still, no differences.

Although it would be tempting to say that this study (which cost 1.5 million dollars and took 18 months to complete the sequencing) provided no information, the fact is that it did tell us something - that there is apparently no direct genetic cause of MS. Otherwise, there would have been a difference in the DNA between the twins.

This doesn't mean that genetics doesn't play a role in MS, however. It could be a situation where there is a genetic component that is "necessary, but not sufficient" and requires an environmental factor to start the process that leads to MS, like an infection that one twin was exposed to and the other wasn't.

It is estimated that the likelihood of an identical twin developing MS if the other twin has MS is 30%. This falls to 4% likelihood in a non-identical twin and less than 3% in a non-twin sibling.

This is the first time that the entire genome of twins with autoimmune disease has been sequenced.

Source: Sergio E. Baranzini, Joann Mudge, Jennifer C. van Velkinburgh, et al. "Genome, epigenome and RNA sequences of monozygotic twins discordant for multiple sclerosis." Nature 464, 1351-1356 (29 April 2010).

基因並不決定一切

新華網倫敦4月29日電

英國《自然》雜誌是一本刊登科學論文的學術刊物。4月29日出版的《自然》雜誌的封面是兩名女性的剪影,一人站著而另一人坐在輪椅上。封面論文講的 是這對基因完全相同的同卵雙胞胎姐妹不同的生命故事:她們一人罹患多發性硬化症,而另一人完全健康。論文得出的結論是,基因並不決定一切。

   參與這項研究的科學家賽爾吉奧·巴蘭茲尼說,雖然這對雙胞胎的基因組相同,但由于後天不同的環境因素等原因,導致了兩人完全不同的結果。

   近年,全球基因科學發展迅速,但公眾對于基因的認識有走向偏頗的勢頭。此次研究,恰好是對這種偏頗敲響了警鐘。

   今年是首個人類基因組草圖公布十周年。十年來,基因測序技術飛速發展。繪制首份基因組草圖需要多國科學家聯手,耗時十年、耗資數十億美元。現在,一個小 規模的研究小組可以在幾個月之內以一兩萬美元的成本測出一份基因組。

  技術的巨大進步導致基因研究工作在 全球迅速鋪開。目前這方面研究以發現某種疾病的致病基因為主。如去年澳大利亞和新西蘭研究人員在《自然·遺傳學》上報告發現了兩個與多發性硬化症有關的基 因。

  但是這類研究經常受到大眾的錯誤解讀。如《自然·遺傳學》曾刊登與吸煙有關的基因研究報告,隨後大 眾媒體上出現了諸如“吸煙易上癮都是基因惹的禍”、“戒不掉煙,可怪基因”之類的標題。這種論調否定了後天環境和個人生活習慣對健康的影響。本次研究及時 揭示了問題的另一面:雖然基因對人類健康影響重大,但並不決定一切。

附上Nature的官方網頁:http://www.nature.com/nature/journal/v464/n7293/。

所以,即便基因有缺陷,或許並不足以影響,後天的環境也是相當重要的,就如同一個彈藥庫內放了滿滿的易燃物和炸藥,若沒有相對的高溫和引信是無法引起此彈藥庫的爆炸的!

所以,對於已經生病的MS病友們,我們目前可以做的就是把後天的環境調整好,把引信和雷管拆除!靜脈擴張也許也是一種方法之一 ~
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