一個來自國外患有MS病症的女性: Donna Clark的故事~
Donna Clark是一位46歲的女性, 她因為得到了多發性硬化症而失去了她的男朋友, 並且和她的父母親住在一起. 但是他並不會老是在這些這些事情打轉. 相反的, 她對她的父母懷抱著感激之情, 而目前他仍然能夠走路..
在她17歲那年,她被診斷出罹患多發性硬化症: 一個自體免疫系統失調而攻擊中樞神經系統的疾病
神經的病狀從她16歲的那一年開始緩慢的發作, 其一就是她出現了複視(雙重影像)的症狀爾後視神經被診斷出發炎(脫髓鞘)的情形. 接著17歲那年, 她的笑容變得歪斜(顏面神經受損). 當時她的神經科醫師並不確定是因為腫瘤,病毒,或是MS所引起這些症狀...
直到她的左臉一直出現肌肉微微顫抖而因次做了更多的測試後才確診為多發性硬化症
她說: 即便如此, 我依然不以為意, 我並不擔心.
這麼多年來, 複視(雙重影像)的症狀直重複著發作, 左臉也持續出現肌肉微微顫抖的現象, 甚至眼睛抽動痙攣, 眼皮不由自主的上下翻動. 直到類固醇的幫忙才解決了這些惱人的症狀...
1993年, 她再度的遭受了更大的發作, 她無法控制下肢的移動並且無法走路(下肢癱瘓). 藉由藥物的控制使得他再度獲得4肢的控制權, 並且使用了腋下拐杖6個月..至今, 她能夠有較好的下肢控制能力, 而且能夠只用一根柺杖就能夠行走了.
她是如何讓自己維持行走的行動能力的呢? 他到底是如何做到的? 她不僅是借助藥物來降低或控制症狀, 並且持續的健身(藉游泳), 更重要的, 當她覺得壓力大的時候, 她一定保持安定的心境, 藉此來保持一個正面的態度.
她說: 藥物只是一個幫助, 但也只能夠阻止一切的再惡化. 你所能想到的能夠做的事就是就是讓你自己的腳步慢下來! 包含生活的步調 .
現在的她, 只需要一根手杖就能夠走一段長距離的路程, 但是較長的路程就因為會疲累必須要借助輪椅.
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所以, 從17歲到46歲, 她不會因為獨自一個人或行動不便, 或必須和父母住在一起就產生任何負面的想法, 相反的, 我們只要心存感激, 並且藉由藥物的控制, 心情壓力的調適, 加上良好運動和復健, 一定也能夠進步的!! 我目前也正在這麼做, 那你呢? 就從現在拋開所有的憂慮焦慮和不安吧, 出去走走, 游泳, 健身, 讓自己的身體動起來, 啟動自身的療癒能力和組織再生的能力吧!!
以下為原文:
Woman confronts multiple sclerosis with swim workouts, relaxation
LONGMONT — Donna Clark lost boyfriends and lives with her parents because of multiple sclerosis. But the 46-year-old Longmont woman doesn’t dwell on those things — instead she feels grateful for her parents and that she’s still able to walk.
Clark attributes her ability to stay mobile not only to medications, which reduce the symptoms, but also to staying fit, staying calm during stressful times and to keeping a positive attitude.
“The drugs are a help, but what you have to do is (just) stop,” Clark said. “You think about what has to be done and slow yourself down. “
At age 17, Clark was diagnosed with multiple sclerosis, an autoimmune condition in which the immune system attacks the central nervous system.
Signs of the neurological illness began to creep up at age 16, when she was diagnosed with optic neuritis, an inflammation of the optic nerve, which caused the teen to experience double vision. By the time Clark was 17, she developed a crooked smile and was sent to a neurologist, who for a while wasn’t certain if a tumor, virus or MS caused her symptoms.
After suffering from a tingling of the left side of the face and completing more tests, Clark was diagnosed with MS.
“Even then, I didn’t worry about it,” she said.
Over the years Clark suffered more bouts of double vision, tingling in her face and eye twitching. Her eyelids would flutter up and down uncontrollably, until prescribed steroids stopped the annoying symptom.
In 1993, Clark suffered an attack which left her unable to control the movement in her limbs and also unable to walk. She was prescribed medication, which eventually led to her being able to control her legs and arms, but needed to use Canadian (forearm) crutches for about six months. Over time, the medication improved her limb control, and she graduated to a cane and then to walking again unassisted.
Today, Clark only uses a cane while walking long distances. Sometimes if the distance is too long, she resorts to a wheelchair because of the fatigue.
( 美聯社威斯康辛州23日電)
即使身患重疾，仍然可以攀登上7大洲的最高峰！威斯康辛的退休女教師舒奈達，5月22日登上了世界最高峰——珠穆朗瑪峰，完成了征服全球7大洲最高峰的創舉。
舒奈達周五與登山隊從尼泊爾境內的珠峰基地出發，在中部時間晚上7點30分踏上了2.9萬呎的最高點，成為全球首位征服「世界屋嵴」的中樞神經疾病病人，亦是首個登遍7大洲最高峰的多發性硬化症病人。
無獨有偶的是，本月27日是「國際多發性硬化症日」，舒奈達登山時也特地帶上了一面旗幟，她希望自己的努力，也能夠成為全球同類病人的力量泉源。
52歲的舒奈達是威州的退休教師，本來活躍於戶外活動，但10年前確診患上多發性硬化症，由於神經系統問題會令病人在肢体活動以至大腦認知上都面對常人無法想像的困難，故此舒奈達的登山創舉尤其令人欽佩。
由於病情和經濟條件的限制，無法像專業攀山人士般接受訓練的舒奈達自行以「土法」鍛鍊，包括在家鄉背負50磅的背包上山，又模擬登山的側行步法，負重在跑步機上練習，直到自己能達到背負體重40%的包裹登山的目標為止。
1999年確定病情後，醫生曾預言舒奈達不久後就會在輪椅中度過馀生，想不到她先在短短一年內登上了南美洲最高峰阿空加瓜山，其後又分別征服非洲最高峰乞力馬扎羅山、歐洲的厄爾布魯士山、北美的麥金利山、大洋洲的科休斯科峰以及南極洲的文森峰，最後隻剩亞洲的珠峰。
對於自己達成心願，舒奈達稱其實多發性硬化症才是她生命中最難克服的大山。她表示回國後會繼續周游各地演説，鼓勵和自己面對同樣遭遇的人挑戰極限。
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台灣神經學學會監事、台北榮總神經醫學中心主治醫師蔡清標提醒，若短時間內發生兩種以上神經症狀，如手腳無力、視力模糊甚至喪失，尤其泡熱水澡後出現這種狀況，就要就醫，否則，嚴重時會導致癱瘓或死亡。
張小姐大二時第一次就醫，醫師懷疑可能是準備研究所，壓力太大，張小姐也不以為意。一年後再次發病，張小姐出現類似中風症狀，半邊身體麻痺，醫師一度懷疑她罹患多發性硬化症，但也不敢肯定。
之後，平均每一年半到兩年，張小姐的虹彩炎就發作一次，去年眼壓高到彷彿眼球都掉了下來，讓學醫管的她覺得情況不對，到台北榮總就診後確定是多發性硬化症。
蔡清標說，多發性硬化症是大腦及脊髓病變引發的罕見疾病，屬於自體免疫疾病，由於症狀多樣，素有「千面女郎」之稱，診斷不易，但像張小姐花了九年才確診的個案也不多，根據健保局資料，截至目前(2008/2)全台灣有七百多名病例。至(2008/10)全台灣已達過八百多名病例。
除了早期診斷、治療，可以減少發病次數，降低嚴重度，蔡清標提醒，天氣變冷，不少民眾喜歡洗熱水澡或泡湯，但對多發性硬化症病友來說，這卻是一大禁忌，由於高溫影響神經傳導，泡湯會讓症狀加劇。
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Having set my goal as giving you the type of information that I would be interested in, I will start with my “bottom line,” summarizing my take on Tysabri. I have then compiled more detailed information, which follows.
Bottom Line: Tysabri has been shown in trials to be twice as effective as the CRABs in preventing relapses, without the flu-like symptoms of the interferons or potential disfiguration due to lipoatrophy from Copaxone. It is given only once a month by infusion in an infusion center, or in your doctor’s office (in other words, you don’t have to inject yourself). Tysabri目前在臨床上顯示了能夠比上述注射藥物好2倍的效果,而且沒有類感冒的副作用,也不會造成皮膚外觀的變形. 它只需要一個月注射一次, 是由護理人員來注射的.
The catch? PML (progressive multifocal leukoencephalopathy) which has occurred in three people taking Tysabri, resulting in two deaths and one case of severe brain damage. The estimated risk of PML is 1/1000, but is probably lower than that, as the people who had PML were also taking other immunosuppressants or modulators. Because of the risk of PML, Tysabri is recommended for people who are not responding to their first-line CRAB treatment, cannot tolerate the side effects of the treatments or have aggressive forms of relapsing MS. You may find yourself in a position to decide if Tysabri is a good choice for you. In my opinion, the real “bottom line” is how you feel about the 1/1000 statistic. Clearly, the odds are hugely in anyone’s favor that they will not get PML from taking Tysabri. However, anxiety and worry are side effects, too. If you think that even this tiny risk of PML will cause stress for you, take that seriously into your equation when deciding whether or not to start on Tysabri.風險:在Tysabri的臨床實驗中,曾經有3名患者出現了" PML 多灶性白質腦病"的情形, 有兩位死亡,一位腦部嚴重受損. 發生PML的機率約為1/1000. 也因此Tysabri才會被建議作為對(Copaxone, Rebif, Avonex, Betaseron)這些藥物沒有良好反應的病患的次要療程. 若是你認為如此小的機率都會讓你感到不安,壓力或焦慮的話,建議你一定要好好考慮是否使用此類藥物.
Doctor’s Opinion: You will have to work closely with your doctor to decide if Tysabri is the right thing for you to try, as the prescribing indications of "inadequate response" or "unable to tolerate" the older CRAB drugs is a subjective decision. Also, it is not indicated specifically for relapsing-remitting MS, but for "relapsing forms of MS," meaning that some people with progressive forms of MS who still experience relapses may be candidates for Tysabri. Again, only you and your doctor can make these decisions.
Necessary Monitoring: Tysabri can only be given at an infusion center that is registered through the "TOUCH" program. "TOUCH" stands for "Tysabri Outreach: Unified Commitment to Health" and is the program that was put in place in an attempt to catch any potential cases of PML in early stages, as well as prevent them. You will be examined by a doctor or nurse and get an MRI before starting Tysabri, then examined every 3 to 6 months for neurologic changes. You will be asked to review patient safety information and fill out a short survey before each infusion.
Side Effects(副作用): Tysabri is not associated with flu-like symptoms or depression (side effects linked to interferon drugs). The side effects associated with Tysabri are:
Effectiveness(成效): Basically, Tysabri is twice as effective as the CRAB drugs in reducing relapses – a 68% reduction over two years, as opposed to one-third reduction from the CRABs.
History: Tysabri has had a rocky history. It was approved fairly quickly for use in December 2004, then voluntary pulled from the market by Biogen Idec and Elan in late February 2005, just 3 months after its FDA approval. This was done after it was discovered that two people had developed PML (one fatal, one non-fatal) when using Tysabri in combination with Avonex over a 2-year period (a second PML death was later attributed to Tysabri in someone with Crohn’s disease). In Fall 2005, Tysabri was resubmitted to the FDA for "Priority Status" review. On June 5, 2006, the FDA reapproved Tysabri for use in MS under the condition that all prescribers and infusion centers, as well as patients themselves, be enrolled in the TOUCH Prescribing Program, which involves extensive education of all parties and monitoring of the patients.
Ease of Use: Unlike the CRAB drugs, Tysabri is infused in a doctor’s office or infusion center once a month, so there is no injection at home, no storage considerations and you only have to remember to get to the facility once a month.
Safety: The safety of Tysabri beyond 2 years is unknown.
Pregnancy and Breastfeeding: Tysabri is considered to be in "pregnancy category C," meaning that it caused some harm to fetuses in animal studies but the effect in humans is unknown. Tysabri should not be used by women who are pregnant and should be stopped for some time before trying to conceive (usually one to three months; discuss this with your doctor). Tysabri should not be used by women who are breastfeeding.
Contraindications: Clearly, Tysabri should not be taken by people with PML or who are allergic to Tysabri. Besides that, it should not be taken by patients:
Cost: About 28,400 a year for Tysabri itself, plus fees from the infusion center or doctor’s office. According to Elan's site (http://www.elan.com/), "Elan and Biogen Idec are committed to making Tysabri accessible to appropriate patients who may benefit from therapy. To achieve this goal, programs have been developed to assist patients who are uninsured or who require financial assistance. Patients who require financial assistance can receive more information by calling MS ActiveSource at 1-800-456-2255."
For more information: Tysabri is made by Biogen Idec and Elan. For more information, call 1-800-456-2255, or visit the Tysabri website.
In this study, 25 people with relapsing-remitting multiple sclerosis were given a high dose of vitamin D (14,000 international units, IU, each day for a year) and were compared to 24 people who took a lower dose of vitamin D (1,000 IU a day for a year). In the high-dose group, 16% of the people had a relapse, compared to 40% in the low-dose group. As a bonus, the high dose group reported no side effects from the vitamin D supplement.
The dose given to the high dose group wasn't constant, instead it was increased for 6 months to 40,000 IU, and then decreased. The average dose was 14,000 IU, but it is not known if this is the dose that is most effective. All participants also took a calcium supplement, which is absorbed better with vitamin D.
This is not a call to go dose up on huge doses of Vitamin D. While it is fairly harmless at doses of 600 IU, higher doses can lead to gastrointestinal problems and even kidney damage. The best thing to do is talk to your doctor and have your vitamin D levels in your blood checked (through a simple blood test). Then you can take supplements to boost the level if it seems to make sense.
Up to 10,000iu/daily is known to be a safe upper limit even if you also get plenty of sunshine.
劑量多高呢? 原則上, 一天10,000IU(國際單位)為安全的上限, 再加上足夠的曬太陽就已經ok了. 過高的維生素D可能引發其他的疾病(胃腸的或腎臟的問題). 在服用Vit D的同時,請記得一起服用 Ca鈣, 服用鈣片應合併服用VITD更能促進鈣質吸收(對於長期服用類固醇的我們有幫助).
這是我和他的第一次相逢, 我靜靜的聽著他說著他的故事.... 特別是有一段, 令我感觸很深....第20頁: "生命大發的意義"
這是MS人進化的過程
There is a growing body of anecdotal evidence showing that dietary and lifestyle changes can have a substantial effect on MS symptoms 
A major new study into the disease has been launched by the Multiple Sclerosis International Federation (MSIF) and the World Health Organization (WHO).
They hope to answer key questions about MS, the cause of which is unclear.
Governments are being urged to invest more in education and services to improve sufferers' quality of life.
上述景象，隨著越來越多的抗生素、類固醇、避孕藥、抗精神病藥物的發現，以及開心手術、器官移植、放射化療、輔助生殖等醫療進展，已然大幅改觀；現代人的平均壽命，也逐年提高。在對抗疾病上，現代醫學似乎已取得全面勝利？！
然而實情卻非如此。且不說現代人對己身健康的憂慮有增無減，就連醫生對自己行業的滿意度，也逐年下降；更不用說醫療費用的直線上漲、醫療糾紛的日益增多，以及另類醫療的走紅，在在顯示出現代醫學面臨的困境。
歸根究柢，現代醫學對於許多疾病的成因，仍不了解，也就談不上根治。過去一個多世紀來，除了由微生物引起的多種傳染病、少數由單基因突變造成的遺傳病（纖維囊腫、血友病、杭亭頓氏症）、少數由環境因子（菸、石棉、放射線）造成的癌症，以及多數老化相關疾病（白內障、關節炎、血管硬化、多數癌症）外， 幾乎所有的神經疾病（多發性硬化症、阿茲海默症、肌萎縮性側索硬化症）與免疫疾病（風濕病、過敏性皮膚炎、腸道發炎），肇因都不清楚；這一點，只怕出乎許 多人意料之外。
正因如此，現代醫學常精於診斷而拙於治療；對許多發病機制未知的疾病，就算檢查出來，也只能治標，未能治本。舉個極端的例子，某些帶有致命性遺傳病基因 的家族成員，就面臨是否要做基因篩檢的兩難：不檢查，於心不安，也不敢結婚生子，檢查出來若是陽性，也無計可施，只有等著發病。
隨著社會的多元化, 全球化, 生活腳步的快速化, 壓力化, 現在人所面對的已經不是過去的簡單的疾病了, 現在可能連個感冒(SARS, 禽流感, 豬流感)都可能致死, 更遑論其他的疾病... 簡單的生活, 放鬆的心情, 減少物質的慾望, 應該才是治本之道~~
健康最好!! 健康無價!! 給你給我~~
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