靜脈擴張術後5個月

自從今年6月中診斷出腦內靜脈循環異常（ccsvi）做了靜脈擴張術5個月後的情形如下：

目前我可以一次步行一公里（ 1000公尺) 大概約1500～1600步
然後就需要休息
為了防止跌倒，仍然需要輔助以登山杖
行動力增加

靜脈擴張術後5個月

MS人的希望:CCSVI的經驗和故事(CCSVI發現至今已經一年)

MS病友分享著自己CCSVI的經驗和故事 Testimonials

Hope of liberation: portraits of MS therapy patients

It has been a year since Paolo Zamboni offered the hope of liberation to multiple sclerosis patients everywhere. 一年了，義大利醫師帶給全世界MS人希望已經一年，我們來聽聽以下病友的故事。

The Italian doctor suggested that some cases are vascular disorders caused by vein blockages that lead to a build-up of iron in the brain. The possible way to free up the compromised blood flow – called chronic cerebro-spinal venous insufficiency (CCSVI) – is angioplasty. The procedure uses tiny balloons to open constricted veins.

More related to this story

• For MS patients in Costa Rica, there is no miracle cure
• Father of ‘liberation’ treatment calls on Ottawa to help MS sufferers
• Paolo Zamboni – a Q&A

Photos

Meet seven MS patients who underwent 'liberation' treatment

Since then, hundreds of Canadians have sought out the unproven treatment overseas, paying tens of thousands of dollars out of pocket to have their veins opened up with balloons and stents. One of them, an Ontario resident named Mahir Mostic, died last month from complications after undergoing the procedure at a Costa Rican clinic.

As Canadians look abroad for relief, Ottawa has advised that clinical trials be delayed until more evidence is gathered about the connection between blocked veins and MS. This week, as Newfoundland announced that it would observe a group of patients seeking treatment outside the country, Caroline Alphonso and Siri Agrell set out to do the same.

Steve Garvie, 53, Barrie, Ont.

Diagnosed in 2000 with secondary progressive MS.

Treated in January at the Royal Victoria Hospital in Barrie.

Steve Garvie at his home in Barrie, Ont. Mr. Garvie, who was diagnosed with MS ten years ago and was only mobile with the use of a wheelchair, said his condition improved dramatically after the treatment.

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Patient Steve Garvie

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Results: One of just a handful of Canadians to be treated at home before the programs ended, Mr. Garvie received a balloon angioplasty in his left jugular. Unlike other patients, he said he experienced no pain during the procedure and claims to have felt better on the operating table.

“I said to the doctor, ‘You’ve done something. My left hand works.’ It was pretty cool,” he said.

Before the procedure, Mr. Garvie used a wheelchair, had no control over his bladder and his left side was completely numb. But so few MS patients had received the treatment, he didn’t know what would happen. “It was so early, I didn’t know what to think. I hoped the progression would be stopped. I was just desperate to not die. I figured I’d die in about five years.”

Seven months after the surgery, he stopped taking his bladder pills and the colour had returned to his left foot. He now walks with a cane, except when he’s out with his golden retriever, when he takes his wheelchair.

“Running’s no good for me yet,” he said. “Yet.”

Dion Oxford, 40, Toronto.

Diagnosed with MS in 1997. For the first 11 years, he had relapsing/remitting MS, and it moved to secondary progressive in 2008.

Went to Costa Rica for treatment in June, to the same clinic as Ontario resident Mahir Mostic, who died last month

Dion Oxford went to Costa Rica in June for treatment for MS and has improved somewhat, but still has numb hands and feet and struggles to walk.

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Patient Dion Oxford

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Expectations: Doctors in Costa Rica performed balloon angioplasty on two veins in his neck. “I had high hopes. I did hope that I would get my legs back. I did hope that I would get the feeling back in my hands and my feet. And that my bladder issues would be resolved,” he says.

Results: But after the procedure, Mr. Oxford says: “My initial reaction was one of disappointment, I have to admit, because my hands were still numb and I didn’t notice anything. But the beauty was that I did have my wife with me, who said to me, ‘Dion, you’re not really paying enough attention to how truly better off you are.’ It was 8 o’clock and we were having dinner at a restaurant and she said, ‘By now, every day you’re done. You’ve got no energy.’”

Mr. Dion used a cane to get through airport security on his way to Costa Rica. He didn’t need one when he returned. Still, his walking is not as steady – especially for long stretches – and his hands and feet are still numb. But, he says, he’s not as tired any more. He spent roughly $16,000 for the surgery, hotel and airfare for his wife, daughter and himself.

“I’m just trying to live my life. I’m married. I have a seven-year-old daughter, whom I’m going out with at night now. We actually go to movies,” he says. “It’s a new lease of life. A new hope. A new light at the end of the tunnel.”

Francine Deshaies, 51, Saint Lambert, Que.

Diagnosed with secondary progressive MS in 1994.

Went to Katowice, Poland for treatment in May.

Francine Deshaies— John Morstad for The Globe and Mail

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Patient Francine Deshaies

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Before the procedure, Ms. Deshaies could barely move. She was plagued by headaches, bladder problems, spasms and migraines. She felt no pain during the hour-and-a-half procedure, which involved putting a stent in her left jugular vein.

Results: “After the procedure, my daughter was with me, and she touched my feet, and she said, ‘Mom, your feet are warm.’ They were always cold. And after 15 or 20 minutes, I felt I could bend my knees,” she says.

Ms. Deshaies still can’t walk without the use of a cane. But now, she can go for a walk without having someone by her side. “My autonomy is back,” she says. She’s had follow up care in Montreal, because two weeks after the procedure, there was a blood clot in the stent. It’s no longer there, she says. She spent about $12,000 on her trip to Poland.

“I still have MS, I will always have MS. I’m not a miracle,” she said. “But at least I have a quality of life, which I didn’t have because I was always depressed and always tired.”

Diane Martin, 55, Toronto, Ont.

Diagnosed in 2001 with primary progressive MS.

Treated twice in New Delhi in May and June.

Diane Martin, an editor at Random House, travelled twice to India for treatments for MS but has not yet seen significant improvement.

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Patient Diane Martin

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After returning from her second treatment, Ms. Martin “laid low,” afraid to tell people that despite two angioplasties and a stent, she has experienced no improvement.

“I felt guilty that I was coming home and was not going to be a poster girl for this,” she said. “I felt like I let other people with MS down.”

Results: Her first treatment, which cost $6,500, had resulted in three good days in a row, including an evening in which she was able to make dinner for her son, something she had not been able to do for years. “That was just great and I thought, ‘Okay, I’m kind of sold on this.’ But then it all just went away.” A second procedure, which cost $6,000, has no impact andMs. Martin said she couldn’t face the possibility of a third trip. “I am doing well, but I’m not liberated. It didn’t work for me,” she said.

She wishes that neurologists here were more open to talking with MS patients about the procedure. “I’m smart, I can read, I tried to get as much information about the anti side as I could, because you just don’t know,” she said. “But unfortunately the neurologists are all hysterical. You can’t talk to them. I found it infuriating, actually, that I couldn’t get both sides.”

In contrast, Ms. Martin said the MS group with whom she regularly meets has accepted her experience without judgment or disappointment, she said. She suffered a relapse before her travels and has not quite recovered. Even though her condition is unchanged, she said the hope of a successful treatment was a “wonderful gift.” “I’m in my 50s, I’ve had my children and seen them grow up, so I feel lucky in many ways,” she said. “But I sure enjoyed that hope for a while and I still have it for other people.”

Jan Wexler, 57, Saint-Lazare, Que.

Diagnosed in 1988 with benign MS and developed into secondary progressive MS.

Went to Sofia, Bulgaria for treatment in June and July. Sought treatment again in Albany, N.Y., in October, and is now waiting to hear from a doctor in California.

Jan Wexler — John Morstad for The Globe and Mail

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Patient Jan Wexler

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Expectations: Slumped in a wheelchair, unable to care for herself, Ms. Wexler felt she had no choice but to try the experimental procedure. She had a stent put in her left jugular vein and balloon angioplasty in the others.

Results: At first, the surgery in Bulgaria proved remarkable: She sat upright; she raised her arms above her shoulders; the swelling in her left foot disappeared; she spoke a mile a minute; and the “brain fog” vanished. “My sister was with me, and she said, ‘I can’t believe how fast you’re talking.’”

But the recovery lasted 10 days before Ms. Wexler reverted back to her old self. A second trip to Bulgaria revealed that blood clots had developed in the stent, and her veins had once again narrowed. A follow-up treatment did not improve her condition. Three months later, a doctor in Albany, N.Y., did a venogram – an X-ray that takes pictures of blood flow through the veins – but he couldn’t perform an angioplasty because the veins were too blocked. Having spent as much as $30,000 by cashing in some of her RRSPs and relying on the goodwill of family members, she waits to hear from a doctor in California if he will perform the procedure. “I’m very, very disabled. I’m worse off, actually. I’m much, much weaker,” Ms. Wexler says.

So why keep trying? “Because I know it works,” she responds. “If you lived in my body for one day, you would not have to ask that question.”

Nadia Salhi, 39, Whitby, Ont

Diagnosed in 1995 with relapsing/remitting and secondary progressive in 2009.

Treated in Alexandria, Egypt in May.

Nadia Salhia travelled to Egypt to be treated for MS. She is now helping to bring other patients to the same doctor who successfully treated her.

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Patient Nadia Salhi

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Lying in the recovery room after an angioplasty of her left and right jugulars and azygous vein, Ms. Salhi remembers having the sensation that her hands were suddenly skinny.

“I guess they were numb before and I didn’t realize they were until they weren’t any more,” she said. “I almost felt as though I could hear and feel the blood start to flow.”

Before travelling to Egypt, her airfare and $6,000 procedure paid for by a sister who had just won an online contest, Ms. Salhi could barely walk. She was depressed and rarely left the house. Her vision was bad and after 15 years of coping, her condition had suddenly deteriorated. “I felt like it had beat me,” she said.

Results: Now, she is one of the MS sufferers who claims instantaneous results from her angioplasty and has returned to Egypt every month with other Canadian patients she has introduced to the clinic there. “I’ve been telling anybody who will listen about my experience, even the lady next to me in the grocery store,” she said. Her right leg is still heavy, but she can walk unassisted and drive for more than an hour without getting tired. “I was hoping I could jog and wear stilettos,” she said. “I can’t. But I don’t care because everything else is better.”

Paulette O’Leary, 41, Toronto

First experienced symptoms when she was in high school. Diagnosed in 1997 with relapsing/remitting MS.

Underwent two procedures in May and June in Albany, N.Y.

Paulette O'Leary has twice had vascular procedures done to treat her MS. The first time the effects wore off quickly, but the second time the improvements to her health remained.

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Patient Paulette O'Leary

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Lying on the operating table as a doctor inflated a balloon in her jugular, Ms. O’Leary felt her feet start to sweat for the first time in years. The medical researcher has had two angioplasties in the U.S. and said the impact has been profound. Returning to Toronto after the first procedure, she was able to walk without a cane for the first time in years. But three weeks later, on Father’s Day, she started feeling ill and within two hours, a familiar numbness had spread from her feet to her waist.

“It’s scary. I thought, ‘Is this something I want to do again?’ All these people were warning me, ‘Be careful, be careful,’” she recalled. But to her, the thought of doing nothing was scarier. She had recently started collecting pamphlets for a motorized scooter, which she pictured riding down the aisle at her daughters’ weddings. “All I wanted was to be able to fly a kite with my daughter,” she said.

She decided to return to the U.S. for a second angioplasty, and says her condition has been much improved. “My dad is ill right now and there’s no way I could keep up this pace if I hadn’t had the procedure done,” she said. “My life has changed: I stand taller, it’s just amazing.” She is still taking Tysabri, an MS drug thought to control relapses, and her doctor sends her for venous scans every six weeks to monitor her veins, on the basis that she has a family history of heart disease. She spent $18,000 (U.S) on her treatments and said she would go for the procedure every week if she had to. “If this is available, I don’t really care what it costs,” she said. “I would mortgage my house to have this done.”

Duncan Thornton, 48, Winnipeg.

Diagnosed with relapsing/remitting MS in 2009.

Went to Katowice, Poland in March for treatment

Duncan Thornton — Robert Tinker for The Globe and Mail

His so-called liberation therapy lasted half an hour, and involved a stent being placed in his right vein and a balloon angioplasty in his left. Laying on the operating room table, as the balloon was being released, Mr. Thornton said he felt more awake than he had in years. While his symptoms were not as dire as others, Mr. Thornton suffered from such severe fatigue that he could barely function.

Results: After the procedure? “My brother and I walked around Katowice for hours. And the day after that, we were in Krakow and we walked around Krakow all day,” he says. “I’m nearly normal.”

He knows his symptoms of MS haven’t disappeared. He still feels numbness. All told, he spent about $12,000.

“I went not expecting it was a cure for MS, but that it might stop the progression of the disease. That’s all I was looking for,” he says. “The quality of life benefits I’ve gotten have been astonishing. I’ve gotten hours of my life back every day. I can behave like a normal person. I can play with my kids. I don’t have to measure my energy before I go for a walk and can even go shopping in a mall for more than 20 minutes.”

Perry Goodyear, 37, Grand Bank, Nfld.

Diagnosed with primary progressive MS in 2003.

Went to Albany, N.Y., for treatment in October.

Expectations: “My biggest thing was being able to live longer. They never gave me much time ... I wouldn’t have seen 40 years old,” he says. “It was the last hope really, because all the medication and everything was only making me go down more and more.”

Results: An hour and a half in surgery, three stents and three balloon angioplasties later, Mr. Goodyear describes his procedure this way: “I’m feeling on top of the world now. I’m feeling good, no sickness and stuff like that.”

Prior to surgery, he was confined to a wheelchair, couldn’t eat solid foods, felt fatigued and was prone to illness. He still remains in a wheelchair, but feels tingling in his feet, has goose bumps, which he hasn’t felt in years, has strength in his left arm and he can move his fingers. He’s hoping to walk again, and is scheduled for physiotherapy next month.

He was undeterred even though there were risks involved in the unproven procedure. “I never really had nothing to lose. I was coming downhill pretty fast,” he says. “They [Canadian doctors and the government] are all against it. I don’t know why. But for what I’ve felt since the 4th of October, it’s well worth the $11,000.”

Play audio

Patient Perry Goodyear

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MS人的希望:CCSVI的經驗和故事(CCSVI發現至今已經一年)

國內高壓氧針對MS治療的消息以及討論會議

這也算是今年聖誕節給病友大家的一個小禮物

2010 年中華民國高壓暨海底醫學會冬季會
日期：99 年12 月25 日(星期六)
時間：13:00~17:30【報到時間 13:00-13:30】
地點：台中榮民總醫院 研究大樓一樓第二會場
地址：台中市西屯區中港路三段160 號

免費，唯報名資格：中華民國高壓暨海底醫學會會員，不知道病人能否參加呢?

主辦單位：台中榮民總醫院胸腔內科高壓氧治療中心/中華民國高壓暨海底醫學會
主辦人：吳杰亮 醫師(台中榮民總醫院胸腔內科高壓氧治療中心)
Time Topic Speaker Moderator
13:30-13:40 致詞 許正園主任/吳杰亮主任
16:30-17:20 多發性硬化症與微血管腦病變 林新醫院神經內科 李潤宇主任 黃敦郁 主任
17:20-17:30 理事長致詞

看來此議題對於 多發性硬化症與腦內血管兩者之間的關聯有所著墨


附上 林新醫院神經內科 李潤宇主任對於 高壓氧治療的病變部份如下連結：
http://www.lshosp.com.tw/wei/Folder/f10.htm

有興趣的醫師和病人可以聽聽這ㄧ場演講

閱讀更多:http://www.hbo.org.tw/news_ov.php?AID=153&lang=tw

有關高壓氧的更多資訊 請至以下連結
:http://www.24drs.com/consumer/disease/O2/2.asp

國內高壓氧針對MS治療的消息以及討論會議

走自己的路，不必比較

以下文摘自法鼓文化出版《從心溝通》

如果我們做任何事，都要和別人較量的話，會是很痛苦的事。不管比高比低、比勝比敗，一旦比較，一定會陷入痛苦中。

記得有一年，奧林匹 克運動大會的游泳比賽，有好幾個國家的選手競逐，結果日本選手得到第一名，第二、三名分別是俄羅斯、美國的選手，事後，記者們採訪得到冠軍的日本選手，問 他：「你隔壁的水道，一邊是美國人，一邊是俄羅斯人，他們都曾經打破世界紀錄，你知道嗎？」他回答：「不知道。」接下來記者又問：「你知不知道其他選手緊 追在後，你一度還被俄羅斯勁敵超越？」結果他還是說「不知道」，他說：「我只管游我自己的，不管是誰在和我比賽，我只是一心一意奮力地往前游去。」

可見，當一個人正在努力時，只要把自己分內的事做好，不需要和別人比較。如果存心和人較量，你可能會想模仿別人的做法，但是只要一模仿，就一定會落後，因為 別人已經先完成了，你隨後跟著做，頂多排行第二名，不可能是第一名。第一名的路一定是自己努力走出來的，無論走得好不好，這條自己走出來的路，一定是屬於 自己的。

還有一個故事，是我小時候父親講給我聽的。有一次，我們看到一群鴨子在河裡游泳，父親便問我說：「你看到了嗎？小鴨游出小路，大鴨游出大路，有的鴨子在前面，有的鴨子在後面，但是每一隻鴨子最終都游到河的對岸去了。」這個故事對我的影響很深遠，讓我知道，人與人之間不需要比較，只要 努力走出自己的路就好。

在人生的路途上，不管自己的步調如何，只要是自己走出來的路，這條路就是屬於自己的。例如，「心靈環保」這個名詞， 雖然是我最先提出來的，可是別人也在做，甚至做得更好，不過我不會和他們比較，而且歡迎他們和我一起來推廣這個理念。所以別人的路我可以走，而我的路也可 以讓別人來走。重點是不要互相比較，因為和別人較勁是件痛苦的事，盡力而為，絕對是最可靠的行事態度。

不過，較量心也不完全是負面的，例如，凡夫看到佛已經成了佛，或是某些人在修行方面成就很大，既慈悲又有智慧，相較之下，自己卻沒有這些成就，於是生起效尤之心，發願努力精進。所以在修行的道路上，正面的較量，能激發見賢思齊的心。

《金 剛經》中談到，以恆河之沙這麼多數量的三千大千世界的七寶來布施，其福德還比不上為他人說四句含有佛法深意的偈子，這種在功德上互相較量，便是「好還要更好」、「精益求精」的意義。另外，佛法也有「四正勤」這個名詞──已修的善要增長，未修的善要修學；已造的惡不要再造，尚未造的惡不可以造，也指出了較量 心在修行上正面、積極的意義。

所以，每當我聽說某某法師比我更強，或是某某學者學問比我更好，我不敢有妒嫉、打倒或是要強過他們的念頭，我 只會感到慚愧，知道自己必須更加努力。就像我為法鼓山的弟子們所寫的〈四眾佛子共勉語〉中有兩句：「盡心盡力第一，不爭你我多少。」意思是只要努力去做， 不要和別人比較，否則不但會傷害別人，也會延遲自己的成長。

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比較產生競爭--> 競爭產生壓力--> 壓力帶來困擾--> 困擾導致病症和痛苦

現代的社會，總是充滿著比較，從小，社會就開始無形當中灌輸"比較"，比課業，比成績，比乖巧，還有比誰的爸爸可以買下誰的爸爸（窮爸爸富爸爸）。
大一點，比工作，誰的薪水多，職業好，比誰的女友漂亮，貼心....
再大一點，要婚嫁了，比家室（門當戶對嘛）
更大一點，比成就，比名望，又比子女....
總是不斷地輪迴循環....

煩不煩ㄋ阿？
比不完啊～ 人比人氣死人～

比較，或許激發衝勁，或許帶來困擾，一體兩面～雙刃劍，
端看你如何拿捏，如何平衡～

或許比較也是一種在意他人眼光的象徵，"他人"泛指社會世俗的眼光或價值
你若很在意，那麼就會陷入無間的痛苦當中

走自己的路，不必比較

輕鬆一下

感覺最近的文章都還挺嚴肅的，來一篇輕鬆小品，換個幽默的方式來看看自己的身體囉

素材是來自於朋友轉寄的

話說當God在創造人的身體時,

祂遇到了一個問題 : 每個器官都想當身體的老闆.

腦部說 :"既然我控制著每一件事情,負責作思考,我理所當然是老闆 .."

腳則說:"因為我帶著人到他想要去的地方 ,到達腦部想要所作所為的位置,我才理應當老闆."

手也開口 :"每件工作都要我完成,而且隨身攜帶金錢可以花,老闆應該是我 ."

眼睛也說:"你們每個部位都在我視線之內 ,我也讓大家知道哪裡有危險,當老闆我最有資格!"

接下來, 心臟 、 耳朵 、 肺部 都輪流開口發表政見.
最後終於輪到了 屁眼說話, 它當然也搶著要當老闆.

其他的器官都嘲笑屁眼的想法,搞得 屁眼 惱羞成怒, 遂閉 起它的"出口 "拒絕運作 ! .
很快的,腦部開始發燒,眼睛感到疼痛昏花,雙腳疲軟且舉步維艱 , 雙手也無力地垂下,心臟和肺部氣如游絲的支撐著.
所有的器官都妥協了, 大家墾求大腦別再堅持,就讓屁眼當老闆吧!
就這樣,屁眼 登上了 老闆 的寶座. 所有的器官都在執行各自的任務時 ,而屁眼只要當老闆頤指氣使,然後適時拉出一堆屎....

(這個故事告訴我們: "並不必要是首腦,才能當老闆 ". 或是 "老闆不一定要會思考"或是 "老闆只要能夠讓各個器官運作正常就好")
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想想我的處境：目前我的老闆還真的是屁眼 (肛門) 呢！ 因為肛門無法隨意打開（因為神經受損-->括約肌無法運作），讓我排便功能大大地受影響，便便積多了還會在腸內發酵造成毒素，影響全身....

老闆，讓我輕鬆的大個便好嗎？

輕鬆一下

頸靜脈上安裝支架的風險

從去年2009年至今，從網路上我所得知有關在頸靜脈上安裝支架的MS病患不在少數，

Marian Simka, PhD, from the Department of Vascular and Endovascular Surgery at EUROMEDIC Specialist Clinics in Katowice, Poland, also presented interventional data on a total of 587 endovascular procedures — 414 balloon angioplasties and 173 stent placements — in 347 MS patients, looking specifically at safety.
波蘭Marian Simka醫師已經為347名MS病患進行了一共587次的靜脈擴張手術，
其中414次為氣球擴張，173次的支架擴張。

但截至目前為止，也出現了幾個不幸的例子：

Stanford University School of Medicine in Stanford, California.加州（1個例子）： 支架滑落至心臟 stents can migrate, pushed down from the neck toward the heart.

Bulgarian medical clinic 保加利亞（3個例子） ：在支架附近形成血栓 a blood clot had formed around the stent. stents have blocked with blood clots

Clinica Biblica in Costa Rica，San Jose 聖荷西, 加州（1個例子）：have a mesh stent inserted to prop open a vein in his neck and a blood clot formed around the stent in the vein

MS人注意，要作靜脈擴張術之前，請三思，建議目前最好不要使用支架擴張。國外有4位例子顯示相對的風險，血栓發生的可能而惡化以及支架安裝不穩所造成的風險。

目前使用氣球擴張風險相對支架擴張而言較低。

頸靜脈上安裝支架的風險

好消息: 罕病法修法三讀通過 強化罕病防治

本次「罕見疾病防治及藥物法」修法重點如下：
1. 為加強政府辦理罕見疾病防治研究之主動積極權責，政府應辦理罕病防治與研究。
2. 為確保罕見疾病防治研究業務得以順利推動，正式將罕見疾病預防、篩檢、研究之相關經費入法，明訂於主管機關應編列預算補助之項目。
3. 為舒緩罕病家庭長期使用居家醫療器材之經濟壓力，本次修法亦將居家醫療照護器材費用列入公務預算補助項目。
4. 為擴大罕病法預算並穩定其財源，本次修法更促使菸品健康福利捐之分配收入挹注於補助經費中。

[罕見疾病防治及藥物法修法條文對照表]

現行條文	99.11立法院三讀通過版本
第六條 中央主管機關得委託辦理罕見疾病之防治與研究。	中央主管機關應辦理罕見疾病之防治與研究。
第三十三條 中央主管機關應編列預算，補助依全民健保法依法未能給付之罕見疾病診斷、治療、藥物與維持生命所需之特殊營養食品費用。其補助方式、內容及其他相關事項之辦法，由中央主管機關定之。 　　補助經費，得接受相關單位或團體之捐助。	中央主管機關應編列預算，補助罕見疾病預防、篩檢、研究之相關經費及依全民健康保險法依法未能給付之罕見疾病診斷、治療、藥物與維持生命所需之特殊營養品、居家醫療照護器材費用。其補助方式、內容及其他相關事項之辦法，由中央主管機關定之。 　　前項補助經費，得由菸品健康福利捐之分配收入支應或接受機構、團體之捐助。

在看過修法後的結果，我相信未來對於相關的罕見疾病 如多發性硬化症等的疾病，至少會減少研究經費不足上的窘境，對於想要針對罕見疾病做研究的醫師和相關醫療機構，也是一個好消息。

所以國內針對腦內靜脈循環異常CCSVI 和多發性硬化症MS 的關聯 的正式研究和實驗應該是一個更大的助益。

期待這ㄧ點能夠早些進一步被釐清！能對相關病友有所幫助。
偉哉! 罕病基金會！

好消息: 罕病法修法三讀通過 強化罕病防治

病友提供的藥物能夠協助有比較好的睡眠品質

介紹兩種藥物，病友可以進一步詢問醫師是否台灣有此藥物以及是否通過衛署核准

1.Low Dose Naltrexone 那曲酮（低劑量的Naltrexone）：睡前使用，劑量：1.5 mg~4.5 mg
FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.
美國FDA核准的藥物（低劑量），可幫助自體免疫以及中樞神經系統異常的病症

與MS適應症狀的關係：

People who have Multiple Sclerosis that has led to muscle spasms are advised to begin LDN treatment with just 3mg daily and to maintain that dosage.
適用於肌肉經欒（抽搐;抽筋）

Patients who are exposed to undue fatigue, heat, or a febrile illness may demonstrate a recurrence of prior symptoms, stemming from an area of old neurologic involvement. These areas tend to have increased irritability of nervous tissue surrounding old healed MS scars ("plaques"). Such an episode may be very transient and may not represent a true relapse.
適用於過度感到疲累;倦怠; 發熱的症狀

相關連結：http://www.lowdosenaltrexone.org/ldn_and_ms.htm
http://www.lowdosenaltrexone.org/

2. Gabapentin 鎮頑癲 (輝瑞大藥廠股份有限公司)/康平癲 (瑞士藥廠股份有限公司)
建議：睡前使用
Gabapentin was originally approved in the U.S. by the Food and Drug Administration (FDA) in 1994 for use as an adjunctive medication to control partial seizures (effective when added to other antiseizure drugs). In 2002, an indication was added for treating postherpetic neuralgia (neuropathic pain following shingles), other painful neuropathies, and nerve-related pain.
1994通過美國FDA核准，適用於癲癇，止痛，特別是神經相關的疼痛症狀。
Gabapentin (brand name Neurontin) is a pharmaceutical drug, specifically a GABA analogue. It was originally developed for the treatment of epilepsy, and currently, gabapentin is widely used to relieve pain, especially neuropathic pain.



兩種藥物據病友服用之後有獲得較好得睡眠品質，

相關連結：
http://en.wikipedia.org/wiki/Gabapentin

http://www.google.com.tw/search?hl=zh-TW&client=firefox-a&hs=Ci0&rls=org.mozilla:zh-TW:official&q=gabapentin%E5%89%AF%E4%BD%9C%E7%94%A8&revid=1327609393&sa=X&ei=G-XkTKO-KoLyvQOS7PiYDQ&ved=0CIMBENUCKAA

http://www.ntuh.gov.tw/PMR/Lists/List14/Attachments/87/10253009-200612-34-4-197-208-a.pdf

再次強調：請務必先閱讀以上相關連結後，再詢問醫師和醫師討論是否適合自己的症狀，並且以合法管道取得，切莫隨意購買或擅自服用，避免不必要的副作用或者是藥物上癮症狀產生。

病友提供的藥物能夠協助有比較好的睡眠品質

如果..

這是我今年度投稿至 第九屆文薈獎──全國身心障礙者文藝獎 的另一個新詩作品
因為得到多發性硬化症心有所感而創作的
分享給大家欣賞...

如果

如果，人生可以重來
我將不會重蹈之前的覆轍
我將會好好的善待自己的身體

如果，人生可以重來
我將不會把金錢和物質看得比我的健康還重要

如果，人生可以重來
我發誓絕對不要坐回輪椅

如果，人生可以重來
每天規律的作息和運動將是我日常生活守則
只是，人生只有一次，無法重來
既然如此，我只有竭盡我所能，回復到往日的時光
不論有多麼艱難，我相信一定有明天！

如果..

一年一度的 MS 健走，慢跑，遊行活動

請見以下連結
http://myemail.constantcontact.com/Walk-towards-a-cure-for-MS--exciting-updates-for-2011.html?soid=1101245877983&aid=s_YS6XVtb78
在國外(北美)每年都有這樣的活動共在15000個地區舉辦，主要目的不僅是聚會，加油，募款，並且希望個世界能夠沒有MS多發性硬化症。

Greetings!

Joining a Walk MS event in your area is an incredibly powerful way for you to make your mark against MS.

Join 15,000 area residents who care about people affected by MS by participating, volunteering or recruiting walkers in 2011.

一年一度的 MS 健走，慢跑，遊行活動

靜脈擴張術必須小心注意的事 重要!

引述:CTV.ca News Staffate: Saturday Nov. 13, 2010 10:00 PM ET

MS patients warn of complications after 'liberation'（Stent problem 因為放置支架於頸靜脈中而再次造成血栓）

日前有3位MS病患出國遠赴保加利亞去作靜脈擴張手術，因為放置了支架（stent)，造成了血栓的可能而再度造成症狀的惡化。在此特別請病友注意，若你準備作靜脈擴張手術，盡可能請不要裝支架於靜脈內。以目前我所知道的案例當中，症狀有惡化的多屬於裝置支架的臨床例子。目前支架安至於靜脈當中並不是非常成熟的技術，成功率仍需要再考慮和討論。只建議病友採用氣球擴張的方式。台灣的MS病友請放心，若欲進行靜脈擴張手術的話，北榮目前沒有也不建議使用支架。詳細新聞請見以下報導：

Three multiple sclerosis patients who went outside the country for the "liberation treatment" are warning other patients to make sure they have follow-up care in case they return with complications.

One of them is longtime MS patient Jan Wexler, who went to a Bulgarian medical clinic in June. Doctors there performed an angioplasty on one of her jugular veins in her neck and the azygos vein in her chest, using a catheter-guided balloon to open up veins in the neck, in an effort to improve drainage from the brain.

During the treatment, the doctors placed a metal mesh stent inside the jugular vein to try to prop it open.

For about a week after the treatment, Wexler says she felt great, saying the weight of her symptoms lifted.

"I could sit up perfectly straight in my hospital bed, I could raise both of my arms way above my head," she remembers.

But a week later, the improvements disappeared and Wexler was more disabled than before.

She returned to Bulgaria in July, where doctors found that all the veins were now blocked more than before the first treatment and a blood clot had formed around the stent.

Now, Jan says her health has deteriorated. She is weaker than ever, she can no longer cook or drive, and she needs help bathing.

Wexler says she now regrets ever getting the treatment.

"If I knew that I was going to get worse, I would not have had it done, of course," she says.

Betty Taylor, a single mother of two from Edmonton, also travelled overseas for the treatment. She too went to Bulgaria in June where she underwent two angioplasties, one to open her azygos vein and another on a jugular vein. After her jugular vein blocked up again within days of the first treatment, doctors went in again and inserted a stent.

"I noticed an immediate improvement. Overall, I had more energy I felt better and I was just looking forward to feeling, you know, a little better every day." Betty remembers.

"Right after the treatment I would say I felt 25 per cent better. Within a couple of weeks of the treatment, I definitely felt about 50 per cent better."

But she thinks either the stents have blocked with blood clots, or the veins have re-narrowed, because the benefits of the treatment are now gone.

"I feel worse than before the treatment. Yes, right now I do," she says. "I have no idea what's going on. I just know something is not right and it needs to be fixed."

The Italian surgeon who developed the "liberation treatment," Dr. Paolo Zamboni, used balloon angioplasty to open the veins. He found in his preliminary studies that about 47 per cent of patients saw their veins re-narrow.

Other vascular doctors and interventional radiologists who have started offering the procedure in various clinics around the world have also seen the re-narrowing. So some have been using stents to try to keep the veins from re-narrowing.

Dr. Zamboni doesn't endorse this and has discouraged the use of stents. He notes that patients who have stents inserted for other procedures usually require blood thinners and careful monitoring for blood clots afterward.

There is also the danger that the stents can migrate, pushed down from the neck toward the heart. That has already happened in one patient who was treated In California. That patient required open heart surgery to remove the stent.

While some MS patients are reporting significant, long-lasting improvements after travelling abroad for the liberation treatment, a small but growing number of serious complications are being reported.

One severely disabled Canadian MS patient who was treated in a foreign clinic using a stent developed complications and returned to the clinic for follow-up care. He died shortly after. While CTV News attempted to reach the man's family to learn more, our phone calls were not returned.

Earlier this week, Dr. Yves Robert of the Quebec College of Physicians warned that his members were hearing more of these problems.

"We are seeing patients with significant thrombosis," he told reporters in Montreal.

"It is felt that the number of complications are badly monitored internationally and likely under-reported," he said.

Most foreign clinics offer little or no follow-up after the procedure and few ensure that patients have proper treatment when they return home. Patients who run into problems are left to seek medical care at home, but some are reporting that Canadian doctors won't treat their "liberation" treatment-related complications.

Taylor says when her MS symptoms worsened, she went to her doctor to ask what to do.

"I did not get any help. I specifically did ask one doctor that I see if I could get a referral to a local vascular surgeon just to have someone to talk to about the symptoms I was experiencing. I was given the response. ‘No.' I would not get a referral. "Because I have MS, they are not entitled to be treating me in terms of vascular disease," she said.

Francine Deshaies also developed serious clots after angioplasty treatment in Poland.

"I thought I was dying. I was really scared because it was really painful and I didn't know what to expect," she says

She went to a hospital in Montreal where she says she was told "no vascular doctor" would see her. She eventually found a specialist who's treating her with blood thinners and she now says she feels better than ever. But she has a warning for other patients seeking treatment overseas.

"Follow up is the most important thing. When you come back you've got to see a doctor. If you don't have a doctor or follow-up, you better not go. If you have a problem, you are done," she says.

Earlier, this week, doctors in Quebec discouraged patients from seeking the treatment overseas until formal studies are completed. But the doctors say that given the possibility of complications of blood clots, patients who choose to go abroad will get follow-up care.

The message from doctors in other provinces isn't clear.

Meanwhile, Taylor is booked for another procedure in November where she hopes an American doctor will deal with her complications and give her a lasting improvement.

Wexler is also hoping to find a way to deal with her situation at a clinic in California. She still believes the treatment will have merit for many of those with MS. But she has her own advice for MS patients eager to get the endovascular treatment and are willing to travel anywhere for it.

"I would say if you can wait until there is more out there, because you don't want to get worse. That's the thing," she says.

靜脈擴張術必須小心注意的事 重要!

從來沒想過

這是我今年度投稿至 第九屆文薈獎──全國身心障礙者文藝獎 的新詩作品
因為得到多發性硬化正心有所感而創作的
分享給大家欣賞...

從來沒想過

從來沒想過，自己的人生是如此的不平凡
從天堂墜落地獄

從來沒想過，自己的人生是如此的罕見
必須要面對無法治癒的疾病，而她竟是如此的折磨人

從來沒想過，原來身體竟是可以如此不受到自己的控制
肌肉無時無刻都處於緊繃僵硬的狀態下
夜晚來臨，無數次的抽筋經孿伴我入眠

從來沒想過，無法控制自己的大小便竟是如此的不便
和如此的狼狽

從來沒想過，病症隨機的發作竟然成為人生中最大的恐懼
每天只希望能夠再看見明日的太陽，
活下去成為人生中唯一的夢想和希望

從來沒想過，坐在輪椅上是多麼的不便

從來沒想過，成為路人注目的對象

就因為從來沒想過，這才是人生。



很可惜，連佳作都沒有，這表示，有很多身心障礙者的文筆都相當好呢！

人生有很多都是沒有想過的~!

從來沒想過

MICHAEL LORTIE的故事

來看看MICHAEL LORTIE的故事

請看最下面的影片就可以知道他恢復的情形

或附上影片連結：http://www.ckwstv.com/index.cfm?page=news&id=3639

MICHAEL LORTIE CONSIDERS HIMSELF A NEW PERSON--- HE SAYS HE IS NOW ABLE TO DO THINGS THAT UP UNTIL RECENTLY HAVE BEEN OUT OF REACH.

MIKE LORTIE:

" NOW I CAN SEE COLOURS, AND I SAW THE COLOURS THE VERY NEXT DAY."

LORTIE CAN NOW SEE OUT OF HIS LEFT EYE--- HIS SPEECH--- AND MOBILITY ALL IMPROVED DRASTICALLY.

SEPTEMBER 16TH WAS THE DAY LORTIE'S LIFE CHANGED.

HE DECIDED TO GO TO COSTA RICA TO RECEIVE A CONTROVERSIAL SURGERY CALLED LIBERATION TREATMENT.

THE 20 THOUSAND DOLLAR TREATMENT, DEVELOPED BY ITALIAN DOCTOR PAOLO (PAULO) ZAMBONI, IS BASED ON THE THEORY THAT BLOCKED VEINS IN THE NECK ARE LINKED TO M-S. BY OPENING THOSE VEINS, MOVEMENT WILL BE RESTORED FOR PEOPLE WITH THE DISEASE.

MIKE LORTIE:

"I LABELED IT RIGHT FROM THE BEGINNING TO EVERYBODY, A JOURNEY TO FREEDOM AND IT IS LIKE FREEDOM."

ACCORDING TO LORTIE, THE LIBERATION TREATMENT HAS ALREADY WORKED WONDERS.

THIS IS THE 45 YEAR OLD WALKING BEFORE THE TREATMENT.

AND THIS IS HIM WALKING AFTER THE TREATMENT.

MICHAEL LORTIE:

"THE DROP FOOT IS PRETTY MUCH GONE AND SINCE THE PROCEDURE I HAVE NOT WORN MY LEG BRACE WHICH IS A REALLY NICE FEELING NOT TO HAVE TO PUT IT ON EVERY SINGLE MORNING."

AILEEN YOUNG:

"THE COLOUR IN HIS FACE AS SOON AS HE CAME BACK INTO THE ROOM HE WASN'T THE PASTY PALE COLOUR HE HAD ROSY CHEEKS AGAIN HIS BROWN EYES JUST SNAPPING, HIS SPEECH WAS ALMOST INSTANTLY SMOOTHER HIS SENTENCES THEY FLOWED HE WASN'T SEARCHING FOR WORDS."

MORGANNE CAMPBELL:

"THERE ARE NEARLY 75,000 CANADIANS LIVING WITH MULTIPLE SCLEROSIS--A DEGENERATIVE DISEASE THAT ATTACKS THE MYELIN SHEATH--WHICH SURROUNDS THE NERVES IN THE CENTRAL NERVOUS SYSTEM.

THE DISEASE IS PROGRESSIVE, STRIKING MOSTLY YOUNG PEOPLE BETWEEN THE AGES OF 15 AND 40."

THE CONTROVERSIAL SURGERY HAS RECEIVED MIXED REVIEWS FROM THE WORLD'S MEDICAL COMMUNITY.

DR. ROBERT ZIVADINOV:

"IT WILL TAKE A NUMBER OF YEARS TO UNDERSTAND IF THERE IS ANY VALUE IN SUCH AN APPROACH."

LIBERATION TREATMENT IS CURRENTLY NOT AVAILABLE IN ONTARIO.

THAT'S WHY HUNDREDS OF MEN AND WOMEN LEAVE CANADA EVERY MONTH AND HEAD TO COUNTRIES THAT OFFER THE EXPERIMENTAL PROCEDURE.

MIKE LORTIE:

" WHAT'S THE PRICE OF FREEDOM, WHAT'S THE PRICE OF YOUR HEALTH"

THE PROVINCE OF SASKATCHEWAN STARTED TO FUND CLINICAL TRIALS THIS PAST JULY-A FIRST IN CANADA.

SOME MEMBERS OF THE ONTARIO'S CONSERVATIVE GOVERNMENT WOULD LIKE TO SEE THE PROVINCE FOLLOW SASKATCHEWAN'S LEAD AND BEGIN VIGOUROUS TESTING.

STEVE CLARK:

" I REALLY THINK ALL OF THE PROVINCES NEED TO MOVE FORWARD, WE NEED TO BAND TOGETHER AND WE NEED TO DO THE CLINICAL TRIALS BECAUSE THESE PEOPLE ARE DESPERATE FOR HELP. "

BUT ACCORDING TO THE M-S SOCIETY IN KINGSTON, MORE TESTING NEEDS TO BE DONE BEFORE THE PROCEDURE IS BROUGHT INTO CANADIAN HOSPITALS.

MARIE WELLES:

" THE POSITION OF THE MS SOCIETY IS "CCSV"I IS IT'S NOT PROVEN BUT IT'S NOT DISMISSED."

THE MS SOCIETIES OF CANADA AND THE UNITED STATES HAVE INVESTED OVER THREE MILLION DOLLARS INTO FUNDING RESEARCH PROGRAMS AND CLINICAL TRIALS INTO DR. ZAMBONI'S TREATMENT.

MARIE WELLES:

"THEY'VE BEEN WORKING VERY CLOSELY WITH THE GOVERNMENT OF CANADA TO EXPEDITE THAT THIS GETS ROLLING VERY QUICKLY."

EVERYDAY IN CANADA THREE PEOPLE IN THE COUNTRY ARE DIAGNOSED WITH MS...FOR THEM, EVERYDAY COUNTS.

UNTIL A CURE IS FOUND, THE CONTROVERSIAL LIBERATION TREATMENT BRINGS HOPE FOR THOSE BATTLING THE PROGRESSIVE DISEASE. MORGANNE CAMPBELL CKWS NEWSWATCH KINGSTON.

MICHAEL LORTIE:

" IT TRULY IS AN EXPERIENCE AND IT'S SOMETHING THAT I WOULD NOT CHANGE FOR THE WORLD."

MICHAEL LORTIE的故事

成功實驗性的手術Experimental surgery a success

摘自Experimental surgery a success - News - The Advertiser

Local woman experiences amazing improvements

Cora Ward在手術後展現的笑容

Point Leamington resident Cora Ward returned home from Poland last month after receiving the controversial Liberation treatment to treat symptoms of MS, a disease she has had for 33 years.

Local woman experiences amazing improvements

Cora Ward can snap her fingers. For most people, the simple act of clicking their thumb across their fingers is something they are able to do naturally
Cora Ward，一位罹患多發性硬化症達33年的女士，上個月從波蘭做完靜脈擴張術後，體驗到了驚人的進步。她可以彈指了。

For most people, the simple act of clicking their thumb across their fingers is something they are able to do naturally. But for the 50-year-old Point Leamington resident, it is something she has not been able to do for over two decades.

對許多人而言，彈手指是一個再簡單不過的事，但是對50歲的她，無法做這個動作已經20年了

She has suffered from multiple sclerosis (MS) for the past 33 years.

In mid-October, she returned from Tychy, Poland, where she underwent a controversial surgery known as the Liberation treatment to hopefully alleviate symptoms of the disease.

“Before, when she went to get out of the car, (her husband) would have to stop the car, get out, open her door and turn her. When she stopped that day, he never got a chance to stop the car before she got out." - Yvonne Janes

“They do (the procedure) and then they want you to lie in bed for six hours,” Ms. Ward said. “I felt my fingers right away. When I woke up I said ‘oh! I can feel my hands!’”

再經過靜脈擴張術後，躺在床上約6小時，我立刻可以再度感覺到我手指的存在，當我睡醒後，喔，我可以感覺到整隻手了!!

The new technique, developed by Italian researcher Dr. Paolo Zamboni, came to light in late 2009.

His studies of chronic cerebrospinal venous insufficiency (CCSVI) determined that the symptoms of MS could be alleviated. According to the MS Society of Canada, the condition involves "a hypothetical disruption of blood flow in which the venous system is not able to efficiently move blood from the central nervous system, resulting in increased pressure in the veins of the brain and spinal cords, which in turn results in damage to these areas."

The treatment involves an angioplasty-like procedure to open the blocked vein with a small balloon.

Ms. Ward was able to travel to Poland thanks to the fundraising efforts of people in her hometown and surrounding areas who provided her with close to $15,000. The community came together for walk-a-thons, bake sales and concerts to raise the money.

Cora Ward能夠旅行到波蘭，是因為在他家鄉許多人的募款活動(遊行，賣烘培食物，舉辦音樂會)讓她能夠到波蘭進行15000美金的手術。

And the community was waiting for her at the bridge in Point Leamington on Oct. 16 when she returned.

Yvonne Janes has been involved with several fundraising initiatives for Ms. Ward.

珍妮就是為了她參與募款的人，

Residents of the town were excited for her return, she said.

鄰居們對於他的回復都很激動也很興奮。

“She started to cry when she saw everyone,” Ms. Janes said.

當Cora Ward看到鄰居們隨即懷著感激的心情激動得落淚

“Before, when she went to get out of the car, (her husband) would have to stop the car, get out, open her door and turn her. When she stopped that day, he never got a chance to stop the car before she got out. Everyone was amazed at how fast she got out of the car.”

Ms. Ward has experienced significant results from the procedure, which helped open blockages that doctors treating her in Poland said had closed 80 per cent of the vein on the left side of her neck and 20 per cent on the other.

醫師告訴Cora Ward他的靜脈接近80%的窄化程度(只剩20%)

When asked by the Advertiser whether her positive outlook and faith assisted in the results, she said the surgery itself was amazing.

“I don’t think so,” she said. “Because the things you saw over there was fantastic. One girl was done with me – she used to have to drink through a straw and she had tremors. After she only had a slight tremor, nothing like before. I am sure faith and a positive attitude has a lot to do with it, but she was changed.”

Ms. Ward said she had requested to be included in a study announced by the provincial government in September into the surgery, however to date she has heard nothing from the Department of Health in that regard.

“I called (for the trials) and told them I was going to Poland. Nothing was set up before I went on Oct. 8,” she said. “I called again and told them I was back. The doctor in Poland sent a CD of the procedure and the information on the blood flow before and after. I am very frustrated. They have the equipment and they have the people who know how to do it. What are they waiting for? They came out and said it, everybody was really excited that our province was going to help do something for people and it has gone nowhere.”

For now, Ms. Ward is simply enjoying her newfound ability to perform tasks most people take for granted. As she speaks, she alternates between crossing her legs and swinging them like a child, both simple acts she was unable to do a month ago.

She said her whole body has improved and she heartily recommends the treatment to other MS patients.

“I was like a piece of cardboard before - now it is not like that,” she said with a smile.

“I would say to anyone who is thinking about it – go. Your life is changed.”

我會對正在思考這個手術的任何人說: 去吧 你會改變你的生活!

成功實驗性的手術Experimental surgery a success

每個打擊，都有它的意義

引述嚴長壽的文章 "每個打擊，都有它的意義"

並加上自己的一些看法...

我不祈求一帆風順，萬事如意，我只祈求當每個問題發生時，有繼續面對問題的勇氣與毅力，支撐下去。

人生路上，挫折常常會沒有預警地從四面八方襲來。可能是無法抗拒的天災地變(想想那些遇到地震，海嘯，洪水，土石流，山崩的人)；可能是難以預料的生老病死(每個人一生中都會遇到的事，用不著看得太重)；可能是努力工作，卻懷才不遇(千里馬很多，伯樂很少，看開一點)；可能是全心付出，卻換來情人變心的回報(這個很常見，你喜歡的人不喜歡你)；可能是用功苦讀，卻進不了理想的學校(你想要的學校或科系或許並不適合你)；可能是辛苦創業，卻落得血本無歸的下場(請慎選投資合夥人並注意金融海嘯)。

面對各種不同的挫折，每個人的「容忍能力」都不同。(每個人的特質，人生觀，家庭環境背景，生活習慣，喜好都不同，所以每個人都有他的弱點和罩門囉)

有的人受不了被拒絕
一個高學歷的朋友，從拒絕接受他感情的女生住處跳樓自殺，留下無限的遺憾與惋惜。「他條件那麼好，還怕找不到更漂亮的女朋友嗎？」「沒想到他長的那麼帥，還會殉情！」「何苦如此專情？天涯何處無芳草！」

大部份的親友們都以為他是個死心眼的癡情奇男子，其實了解內情的人都曉得，從小到大，他不知道拋棄了多少個女朋友，讓多少人為他傷心難過，卻受不了被人拋棄一次。

有的人受不了被誤解
到國外留學多年的朋友，提起出國一段不甚愉快的職場往事，仍然氣憤難耐。當年因上班的地點，位於寸土寸金的商業精華區，幾乎每天都為了找停車位而遲到。直屬上司希望他能準時上班，便建議他把車子停在公司的停車位。

由於職位低、年資淺，朋友心想「公司的停車位哪輪得到我來停呢？」為求慎重起見，他再三詢問上司「不會有問題嗎？真的可以停嗎？」

上司拍著胸脯保證，「絕對沒有問題，可以停啦！」

不料第一天把車子停在公司的停車位，就出事了。上班後不久，上司突然叫他「你的電話。」拿起話筒，劈頭就被一個陌生女子罵了一頓「我是公司的副理，立刻把你的車子開走。誰叫你把車停在我的位子上，害我上班遲到！」

被對方罵得莫名其妙，上司卻一點表示也沒有，朋友立即提出辭呈，不管公司怎麼留都沒有用。

有的人受不了被挑出錯誤
我認識一個辦事能力很強的朋友，他什麼都好，就是受不了被挑出錯誤。只要，有人當眾指出他「哪裡做錯了」便辭職不幹。很多時候，面試他的主管起初都想不通，以他的學歷，早就該升官了，為什麼一直在原地打轉？等他提出辭呈才恍然大悟，原來他受不了被挑出錯誤。

有的人受不了一點不完美
好友的女兒生日，特地邀請幾個漂亮的阿姨去為小朋友慶生。切蛋糕時，有個小客人拿到蛋糕缺一角，他馬上把蛋糕推開，「我不要吃破一個洞的蛋糕！」

「只缺一小角啊，蛋糕還是很好吃喔！」任憑阿姨們說破嘴，他就是不接受這塊缺了一角的蛋糕，最後只好換一塊「完美無缺」的蛋糕給他。看他為了一點缺角而拒吃蛋糕的表情，我很替他的未來擔心，是否每次都能如願換到一塊完美無缺的蛋糕呢？

１、想想自己，受得了挫折嗎？
２、受得了被拒絕嗎？
３、受得了被誤解嗎？
４、受得了被挑出錯誤嗎？
５、受得了失敗的打擊嗎？
６、受得了期待落空嗎？
７、受得了不完美的存在嗎？

「挫折容忍度」，說簡單些，即是「一個人承受打擊的能力」。承受打擊的能力越強，自然學到的經驗越多，累積的成功及本錢也越多。承受打擊的能力越弱，自然會想辦法躲避挫折，同時喪失自我磨練的機會。

挫折，是年輕人最好的禮物
記得曾看過一篇文章，作者提到：他剛從軍中退伍時，只有高中學歷，無一技之長，只好到一家印刷廠，擔任「送貨員」。一天，這年輕人將一整車四、五十捆的 書，送到某大學的七樓辦公室；當他先把兩三捆的書扛到電梯口等候時，一位五十多歲的警衛走過來，說：「這電梯是給教授、老師搭乘的，其他人一律都不准搭， 你必須走樓梯！」

年輕人向警衛解釋：「我不是學生，我是要送一整車的書到七樓辦公室，這是你們學校訂的書啊！」

可是警衛一臉無情的說：「不行就是不行，你不是教授，不是老師，不准搭電梯！」兩人在電梯口吵半天，但警衛依然不予放行，年輕人心想，這一車的書，要搬完，至少要來回走七層樓梯二十多趟，會累死人的！

後來，年輕人無法忍受這「無理的刁難」，就心一橫，把四、五十捆書搬放在大廳角落，不顧一切的走人。年輕人向印刷廠老闆解釋事情原委，獲得諒解，但也向老闆辭職，並且立刻到書局買整套高中教材和參考書，含淚發誓，我一定要奮發圖強，考上大學，我絕不再讓別人「瞧不起」。

這年輕人在聯考前半年，天天閉門苦讀十四個小時，因為他知道，他的時間不多了，他已無退路可走，每當他偷懶、懈怠時，腦中就想起「警衛不准他搭電梯」被羞 辱、歧視的一幕，也就打起精神、加倍努力用功。後來，這年輕人終於考上某大學醫學院。如今，二十多年過去了，他也變成一家開業診所的中年醫生，然而，他靜 心一想，當時，要不是「警衛無理刁難和歧視」，他怎能從屈辱中擦乾眼淚、勇敢站起來？

而那位被他痛恨的警衛，不也是他一生中的恩人嗎？經國先生曾說：「失意時需要忍，得意時需要淡。」的確，人，都有失意，不順遂的時候，然而，我更相信！「挫折，是年輕人最好的禮物！」

人只有在遭遇挫折，被他人百般刁難、岐視、嘲諷時，才能「打醒自己」，讓自己被「當頭棒喝」而驚醒過來！這豈不是一生中最珍貴的禮物？因此，

如果現在的挫折，能帶給你未來幸福，請忍受它。如果現在的快樂，會帶給你未來不幸，請拋棄它。「生命中的每個挫折、每個傷痛、每個打擊，都有它的意義。」祝福大家都能夠突破自己所不能突破的難關。
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每個人都有他"走不過"的關卡，但是一旦走過了，釋懷了，⋯⋯那將是一片海闊天空。
面對問題，找出答案，解決問題，就是我的信念，不管答案如何，有形或無形，能夠讓自己度過就是成功。
即使倒下，都要想辦法再站起來~!
我想我應該已經找到答案了~

對於處於病痛的人而言，
或許人生最大的挫折莫過於病痛(癌症，罕病，突如其來的外傷等)，但是只要接受了，克服了，度過了，或釋懷了，放下了，我想今後沒有任何事情能夠擊倒你，因為你已經修煉成功，原來的罩門將不在，就能練就一身金鐘罩鐵布衫了。所以讓我們一同來通過這個人生中最大的考驗吧！

看看最近的新聞吧，一位年越40歲，靠減肥成功的單身女強人，累積很多的財富，但是卻因為對於自己身材過於追求完美，去手術後導致部分腿皮膚潰爛，無法治癒....
看到後只覺得：不斷的追求完美的身材導致如此下場.... 何必呢?

數字的背後，隱含著不為人知的祕密：
現代人往往追求無盡的財富，卻不知道數字背後的意義，一集酬勞92萬的代價竟是被火紋身...
年薪越高，所背負的責任越重，壓力越大，在你追求之前，請想想背後你必須為這個極高報酬所付出的代價：日以繼夜16小時的工作？拋家棄子，遠赴他鄉? 獨身寂寞? 藝人的高收入是他們付出多少的努力才能夠有今天？想清楚了再決定!


人生無常，不如意事十常八九，能隨時開心就好! 生命會找到出口~

每個打擊，都有它的意義

又一位MS病友遠赴波蘭進行CCSVI Liberation 手術

一位外國病友Sebastien日前動身至波蘭進行CCSVI Liberation 手術，術後恢復情形良好，來聽聽他的說法:

Ok I got fixed. I have all kind of changes in my symptoms plus improved stuff. I did not even noticed were wrong.

真是太棒了，又一位MS人獲得重生!
期待他對於手術前後的影片!

也希望北榮能夠盡快核准CCSVI 靜脈循環異常的"Liberation" 手術通過IRB認可

(之前他曾詢問過是否能在台灣進行手術，但是還是等不及，仍然先一步遠赴波蘭，畢竟能夠先一步解決，更能掌握恢復的黃金時間)

又一位MS病友遠赴波蘭進行CCSVI Liberation 手術

給MS病友 For MS sufferers

我瞭解等待的焦慮著急和痛苦，因為我也曾經這樣過，不過各位回過頭去看，我們不也不斷的支撐到現在? 從確診，到服藥，到皮下注射，雖然有人和發病的時候一模一樣，有人穩定了，或有人慢慢惡化，也有人逐漸好轉。但是千百個日子，我們都能夠度過。

我知道被病痛一直摧殘的心情，因為我也曾有過，我能體會希望和信心一直被磨滅的感受，但是無論希望和信心如何被磨滅，請不要讓它消失。即使有那麼一點點火苗，那麼一點點的光亮，那麼一點點的希望。都請不要放棄!

你可以釋懷，可以放下，放寬心，但是請不要放棄! 只要好好的盡力的保持自己的身體健康和心理在最佳的狀態。未來一定會有機會。

給希望參與CCSVI檢查和靜脈擴張手術的MS病友，在等待的時刻中，請好好的盡力的保持自己的身體健康和心理在最佳的狀態。才能夠在一切都準備好的狀況下迎接重生的那一天! 我相信那一天不遠了!!

Official experimental clinic trail is under planning and will be lunched in Taiwan.
Be prepared to face the day that you are reborn (Liberated).

給MS病友 For MS sufferers

有關靜脈循環異常的研究 CCSVI related 必讀

在前不久的一篇文章(多發性硬化症患者尋求 靜脈擴張治療)當中曾經提到：

But Dr. James Bowen, who's been treating MS patients in Seattle for 27 years, says the theory is problematic. He says it's difficult to explain how blockages in the neck could affect so many parts of the body that are affected by MS, like the eyes.
Dr. James Bowen他認為對於眼睛的部分很難用靜脈窄化來解釋 (其實這個部分 榮總胡醫師曾做過研究，其實眼睛的症狀和靜脈血液回流有相關)

以下就附上之前我找到 榮總胡漢華醫師先前在靜脈循環異常的研究，我想病友和醫師看過他的研究結論之後之後，就不難發現，搭的研究似乎也說明了一件事：在經過靜脈血管擴張術之後，有些MS病人的視力恢復做了最佳的解釋。

很久之前，胡漢華醫師就已經針對超音波此一技術做過了許多腦血關管相關的病症的研究，所以
他就如同於Dr.Zamboni一樣. 而去年Dr. Zamboni首先提出了多發性硬化症可能起源於 靜脈循環異常(CCSVI)的關聯性。也是利用超音波針對頸靜脈做出步的檢查而觀察到 頸靜脈內的血管窄化以及血液會回流腦部的現象。所以我認為若能夠就這個基礎上來繼續的研究一定會對全台灣甚至是全世界的MS患者有非常大的貢獻和助益！！

腦血管疾病靜脈回流障礙臨床致病機轉之發現及檢查方法之建立

神經醫學中心神經血管科 胡漢華主任/教授

一、前言 如何利用經濟、有效、方便且不侵犯人體的檢查工具，來瞭解患者腦內循環，是 身為神經內科醫師在診斷病情時所迫切需要的。台北榮總神經內科自從民國79年購置彩色超音波起，即不斷發展新的顱內外血管超音波診斷檢查技術。這十餘年來 已陸續發表十幾篇相關論文在國際知名的雜誌，當然也將這些技術應用在臨床上腦血管疾病患者的檢查。以下所介紹的是我們近幾年來所致力研發的：「腦靜脈回流 障礙」對腦血管疾病患者的致病機轉及其檢查方法。 二、研究緣起 1) 研究背景、環境因素 自從我們率先利用及證實彩色超音波檢查眼動靜脈的流速與管徑，可協助診斷頸動脈虹吸部狹窄(Stroke, 1993)和低腦壓頭痛 (Lancet, 1999) 。眼部動靜脈血管超音波檢查便成為本科常做的檢查項目之一。民國88年有位15歲男性，在車禍頭部外傷一個月後，發生多次的暫時性單眼失明 (Transient Monocular Blindness)。此人眼部超音波檢查發現其上眼靜脈(superior ophthalmic vein)血流呈現方向相反的pulsatile flow pattern。一度認為是C-C fistula，但仔細觀察其血流方向可隨呼吸而改變。再檢查其內頸靜脈(Jugular vein)，發現有內頸靜脈瓣膜閉鎖不全 (Jugular venous valve incompetence )的現象，其靜脈血流的方向亦是隨呼吸改變。這令我們第一次思索頸靜脈瓣膜閉鎖不全與暫時性單眼失明是否有所關聯。接著我們在一星期內連續又作了兩位暫時 性單眼失明患者，發現其上眼靜脈的流向及內頸靜脈瓣膜閉鎖不全的形態，都與第一位男孩相似。於是我們開始進行一系列的資料收集，瞭解內頸靜脈瓣膜閉鎖不全 現象在一般人與我們的病人分佈的情形，其與那些疾病有密切關係，又彩色超音波檢查與核磁共振(MRA)在內頸靜脈瓣膜閉鎖不全的診斷上如何進行為宜。 2)研究創意、個人因素 台北榮總神經內科的腦血管超音波檢查室是個人親自帶領設置的，二十多年來因 一直不斷的研究與技術發表，使我們的團隊不僅在國內居領導地位，更為世界神經超音波界所熟悉。由於長期推展國內腦血管超音波雙月會，個人亦因此而被推舉為 台灣腦中風學會創會理事長與世界神經超音波研究小組（NSRG）執行委員會委員。在此任重道遠的責任下，希望對醫學，尤其是腦血管病患有所貢獻。因此不斷的創新與研究是個人畢生之志向。 傳統上，腦血管病多著重在動脈系統之研究，對於靜脈系統則少有探討。由於國 人腦動脈之硬化狹窄部位迥異於西方人，卻找不到解釋原因。已知靜脈壓上升可導致小動脈血管硬化，因此個人在十餘年前即開始計畫從靜脈回流著手研究，試圖找 出解答。這是為什麼我們會從事一系列靜脈回流研究的主要原因。 三、研究過程 1)研究方法 A：建立頸靜脈超音波檢查方法 利用超音波掃描所有頸部靜脈，設法釐清相對位置及靜脈瓣膜所在。 從因腦血管疾病而作過磁振造影(MRA)患者的影像中，挑選腦部靜脈循環異常者，安排做頸靜脈超音波檢查，瞭解超音波可能會看到何種異狀。 建立正常人頸靜脈超音波檢查的標準。 B：找尋與靜脈回流障礙有關之疾病 從文獻探討中找到「暫時性失憶症」（Transient Global Amnesia）可能與靜脈回流障礙有關。 從之前腦血管超音波室檢查的發現與文獻探討提出假設：「暫時性單眼失明」（Amaurosis Fugax）亦可能與靜脈回流障礙有關。 C：利用個案對照研究設計(case-control study)方式，證明靜脈回流障礙是形成「暫時性失憶症」與「暫時性單眼失明」兩種病因的主要原因之一。 2)難忘經驗 在作超音波檢查時發現受檢者內頸靜脈血流不能流回心臟且呈滯流，為瞭解靜脈為何不通，我們安排受檢者做胸部X光檢查，竟然有三位發現是胸腺瘤壓住下腔靜脈，因而形成左側頸靜脈血無法流回心臟。有兩位開刀後靜脈不通的現象沒了，另 一位則抱怨本來人好好的，來作檢查後竟然要開刀，無法接受此事實。這是我們在作內頸靜脈檢查意外的收獲。 另一難忘經驗的經驗是，一位常患「暫時性單眼失明」的病人，形容他每次發作時多在低頭的姿勢。因此我們先讓他平躺作檢查，並無發現。但在我們加高了他頭部的枕頭讓他模擬低頭時的情形後，竟然看到左側頸靜脈開始滯流，沒多久就呈霧狀不通。此時我們趕緊放平頭部，並請他大口吸氣，不久就恢復正常了。此次雖然讓我們對頸靜脈滯流與「暫時性單眼失明」之間的關係更增加了信心，但也讓我們 緊張了一下。有同仁打趣說如果當時再堅持一下，讓患者當場發作「暫時性單眼失明」，那就有NEJM級的case report了。 四、研究成果 1)重大發現 A.新的靜脈瓣膜檢查： 為了確切瞭解腦血管病靜脈回流障礙致病機轉，我們研發了一套以彩色超音波作頸部靜脈檢查方法。以往認為頸靜脈瓣是唯一腦和心臟之間的瓣膜，在研發的過程中我們新發現腦部回流之靜脈在脊髓靜脈（AJNR, 2002）及左側頭臂靜脈（Neurology, 2006 ; Ultrasound in Med. & Biol., 2007）都有瓣膜阻止靜脈逆流及胸壓上傳至腦部，其重要性正如頸靜脈瓣膜一樣，不應忽視或根本不知其存在。且傳統之超音波頸靜脈瓣膜檢查方法有其盲點造 成誤差。如注射空氣作為顯影劑以檢查頸靜脈瓣膜閉鎖不全，將嚴重地誤導，造成左側頸靜脈閉鎖不全被低估，而右側被高估。因此我們撰寫兩篇文章，敍述了其所 以造成誤差之原因，並介紹了我們的檢查方法及其重要性（Ultrasound in Med. & Biol., 2007）。 B.暫時失憶症的新發現： 我們首先發現暫時失憶症（Transient Global Amnesia）之患者，磁振造影可顯示頸靜脈血液逆流至腦部各主要靜脈竇，導致靜脈壓上升產生症狀。造成頸靜脈逆流之原因為左側頭臂靜脈 （Brachiocephalic vein）之生理性壓迫阻塞造成。左側鎖骨下靜脈及頭頸外部靜脈無法回流，血流必須回流至腦部由對側頸靜脈或上眼靜脈回流到心臟之故。此靜脈逆流不需特別 動作增加胸內壓，正常平臥即已存在。相關致病機轉論述及檢查方法陸續發表於：(1)暫時失憶症之靜脈阻塞機轉及檢查方法發表於Neurology (2006)，本文並被Neurology選錄在當期highlighted section中。研究發現此類患者50%均有靜脈逆流到顱內之現象，正常人50位為對照組則無一人有此現象，究其原因為左側頭臂靜脈之生理壓迫阻塞之 故。(2)Neck vein檢查方法及其臨床意義，已在世界超音波大會受邀keynote speech時發表（Seoul, Korea 2006 in May），並發表二篇論文於Ultrasound in Med. & Biol.（2007）。在此二文中，第一篇我們創新了檢查頸靜脈分枝之方法，這是以往從未有人注意的一條血管，我們介紹了檢查方法及具代表靜脈壓上升的 重要意義。另一篇則強調當近端頭臂靜脈阻塞時，其頸靜脈之表現有一些特別之處。補強了靜脈壓上升造成腦部病變暫時失憶症之原因，我們於此文提出了一個新的 醫學病症，即cerebral venous intermittent claudication，以靜脈障礙解釋致病機轉。 C.建立靜脈回流異常造成暫時性單眼失明（Amaurosis Fugax）的新理論： 教科書教導醫學院學生及住院醫師：暫時性單眼失明致病原因多為內頸動脈狹 窄，造成眼睛血流不足或血管栓塞。因此此類患者一定會接受頸動脈的檢查，但我們發現事實上動脈疾病不多，原因不明者佔多數。因此我們大膽假設靜脈回流障礙 為其致病機轉，全世界醫界我們是第一位提出此理論，並陸續提出理論之佐證文章。 除了在2005年7月日本大阪世界神經超音波大會受邀專題演講發表過外，我 們也陸續整理成文章發表在知名雜誌上（Stroke, 2006; Stroke, 2007及Ann Neurology, 2008）。在第一篇文章討論了教科書教導之不正確訊息，我們發現僅有15.2%的人有顱外頸動脈疾病，67.7%之人單眼失明原因不明，並無頸動脈疾病。第二篇中，我們對這些原因不明之患者進行超音波檢查眼小動脈，證實了患者有眼小動脈阻力顯著地上升之問題。經過排除其他原因後，認為眼小動脈阻力上升乃是靜脈壓上升所造成。我們首度於這一篇文章提出venous hypertension在單眼失明之致病理論，能被Stroke雜誌認同接受刊登，代表我們提出之理論合理。第三篇文章則提出這些原因不明之患者，其超音波檢查發現有顯著高於正常人的盛行率之頸靜脈逆流(reflux)及上眼靜脈逆流。此更佐證靜脈壓確為這一類習慣性單眼失明疾病之致病機轉。 2)對醫療科技發展的影響 在腦血管疾病的治療與評估中，各種危險因子的控制佔極重要的一部份。然而一 些腦中風病患並無法找到明顯造成動脈硬化的原因，在這些患者中極有可能有一些是因為靜脈循環異常所造成的腦缺血， 但至今尚未有人報導過。究其原因，靜脈因管壁薄易變形，不易測量其管徑，其流速易隨呼吸而改變故無法定量。因此除非靜脈壓很大，造成明顯的靜脈回流，否則 在以前是無法利用非侵入性檢查方法如超音波，將病患診斷為靜脈循環異常。今我們提供了簡易有效的頸靜脈檢查方法及佐證，可讓後繼研究者使用。另我們也證明 了靜脈循環異常確實與「暫時性失憶症」與「暫時性單眼失明」兩種疾病有關，目前我們又發現了一些疾病可能與靜脈壓上升相關，也希望未來此將可促使醫界同仁 的眼光，將注意力投入靜脈循環系統。在眾多的智慧努力下，應可將醫學未解之區塊逐步釐清，並發展適合的藥物或處置方式來幫助病患。

在我做血管攝影的時候，我的頸靜脈瓣膜也出現閉鎖不全的情形，以及頸靜脈具有窄化的地方。
希望更多的醫師能夠開始正視此一問題，而我也堅定的相信，CCSVI 靜脈循環異常就是一個造成中樞神經受損的另一個重要的原因之一！


閱讀更多：
請參考
http://www.strokecare.org.tw/share7.html
http://history.vghtpe.gov.tw/portal_f8_cnt_page.php?button_num=f8&folder_id=1&cnt_id=5&search_field=&search_word=&up_page=1

有關靜脈循環異常的研究 CCSVI related 必讀

台灣CCSVI情形更新 CCSVI in Taiwan

目前經過 都卜勒超音波以及核磁共振 MRV 檢驗後發現

在約30位 MS 受試者當中 僅有2位病友沒有靜脈(IJV)窄化的現象

看來，有似乎也和Zamboni的結果雷同，

若是能夠有更多人參與檢測的話，更能夠突顯此一問題的存在性。

目前經過頸靜脈擴張手術之後狀況最令人激賞的就是第3位病友。希望繼續維持下去。

對於靜脈擴張手術的技術，我深信台灣醫師們的能力和專業，只是也許我們(MS人)的群集數目不多，願意做此嘗試的醫師畢竟是少數，所以再次的感謝願意對此持續付出和關注的醫師。
更肯定病友們的勇氣！

手術至今已經4個多月，心中也想知道的就是：大家是否仍對此感到希望，若有機會是否還願意一試呢？

我仍願意，我相信，而且我深信。 對的方向應該獲得支持和研究！

台灣CCSVI情形更新 CCSVI in Taiwan