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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

2015年3月29日 星期日

知識就是力量,是能夠讓自己穩定下來的好辦法

    剛剛又接到一通病友打來的電話,電話那一頭是女性(多發性硬化症的大宗族群),過了11個月又復發的她明顯得非常焦慮和緊張。

    主要的內容是:
   星期六她突然的胃痛伴隨下肢突然的僵硬,無法順利的行走,去了長庚醫院急診 ,但是急診醫師不願意給予高劑量類固醇的第一線治療,也不安排住院,只輕輕的告訴她:【星期一你就去看你的主治醫師好了,打了一個皮下注射針劑就請她回家。】

    聽到這裡,就感覺急診醫師似乎可能不太願意負責,因為我們這種疾病,醫也醫不好,最好不要在職班的時候出現比較好。到時候打了類固醇,又有什麼併發症 ,啟不倒楣?

    再問她,既然回家,有沒有服用類固醇?有服用6顆,但是沒有比較好。我分享了過去醫師開立類固醇服用的標準:服用顆數=體重/5 (四捨五入)。沒想到她也不知道有這樣的規則,我覺得已經是生病的人,就要去了解,並且記住,以防自己被當成人球的時候,必要的處理方式要自己很清楚。
   
    對話中,感覺她對於現在的主治醫師並沒有太好的感覺,而且意見反復。我問她:【你都沒有想過換另外一位醫師?】她回答:【我怕換了醫師之後,最後還是要找回原來的人,會不好意思。】

    我心想:【醫病關係往往也主導病情,如果關係不好,為什麼要僵持在這裡呢?況且,我們也不願意逛醫院,是因為沒多少醫生和醫院肯收。所以我們才要找和自己比較好的醫生。】病人往往因為知識位階不足或低下的情形處於弱勢,而在問診時不能夠暢所欲言,或往往因為醫生斬釘截鐵的語氣而懷疑自己的懷疑。

    她原本住在高雄,現在在台北上班。我問她,隨身有沒有自己的病例病史摘要和影像光碟?她說沒有.....
我覺得只要是現在人,都要有自己隨身的病歷摘要影像光碟等資料,萬一遷移居所的時候,就可以隨時用到。

     對話中,感覺到她的不安,恐懼和焦慮。再問:【你有參加過病友會或知道有MS臉書社團嗎?】她回答:【沒有】

    人在這個社會無法事事都靠自己,須要求助別人或系統的時候, 請大膽的開口。同時,也請向過來人學習。別走冤枉路,封閉自己只會越來越糟。學習是很重要的,健康也很重要,如何利用網路學習已經是現代人必修課程,如果你連網路蒐集資訊和知識都不願意學習的話,那就是真正的弱勢了.....
     
    有時候要問問自己:是不是真的面對了?是不是真的了解了?是不是真的處理了?

 後來給了她蔡醫師的聯絡電話和臉書社團,希望對她有幫助。
醫病關係,永遠是罕病人最棘手的一件事,也是必須穩定下來的首要之務。!
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2015年3月19日 星期四

TED 醫學:睡眠對大腦有多重要-->靜心也是清除大腦廢物的另一種方式




中文字幕影片下載連結:
TED 醫學:睡眠對大腦有多重要

研究顯示,只有睡眠才可以清除我們大腦內的廢物,所以長期的睡眠不足,就容易造成大腦壞死,容易產生阿茲海默症。

我想靜坐,靜心的過程 也就是CSF回流的某種做法,在靜心靜坐的過程中,能夠進入"定"的半睡眠狀態,CSF可能回流,清除大腦細胞內的廢物,進一步的把廢物傳回血管,最後排出體內。
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2015年3月3日 星期二

盼望已久的另一道曙光:幹細胞治療 from UK

Dancing, walking and running again, the wheelchair-bound MS patients after they were given 'miraculous' stem cell treatment

幹細胞治療後,坐輪椅的MS患者再度跳舞,走路,甚至跑步。
  • Pioneering treatment has allowed wheelchair-bound patients to run again
  • Patient given high dose of chemotherapy to wipe out faulty immune system
  • Therapy then uses person's own stem cells to fight the devastating disease
  • It may be the first ever treatment to successfully reverse symptoms of MS
  • 是目前完全逆轉回復的首例治療方式
Britons left wheelchair-bound by multiple sclerosis can walk, run and even dance again after being given a pioneering stem cell treatment.
Doctors have described the recoveries as ‘miraculous’, while patients say they have been given their lives back.
The treatment uses a patient’s own stem cells – the body’s master cells – to fight the disease. 

Professor Basil Sharrack, of the Royal Hallamshire Hospital in Sheffield, said: ‘Since we started treating patients some three years ago some of the results have been miraculous. 
三年前我們治療的病人中有些真是奇蹟。

WHEELCHAIR-BOUND MOTHER WHO CAN NOW DANCE AGAIN

Today, Holly Drewery(主角) can run after her daughter Isla. Two years ago she could take her for a walk only if someone pushed her wheelchair while she held on to Isla’s pushchair.
2年前Holly Drewery只能坐著輪椅抱著她女兒

Miss Drewery, 25, of Sheffield, pictured with Isla, was diagnosed with MS after suffering numbness and blurred vision. She became wheelchair-bound after her health worsened on Isla’s birth. She needed help with basic tasks and couldn’t even wiggle her toes.
25歲的她,診斷出多發性硬化症之後,就飽受麻痺的感覺和複視,在生完它的女兒Isla之後,就坐在輪椅上了。

Three weeks after the stem cell transplant she was able to walk out of hospital. 
Now, more than 18 months on, she is almost back to normal. She has a part-time office job and, although she still gets tired, can dance, run and chase after Isla, two, in the park. 
在作完幹細胞治療後3星期,她可以走出醫院,18個月之後,她回復正常,有個兼職的工作。雖然她現在仍舊會覺得累,但至少她可以跳舞,跑步,和小孩在公園追逐。

She said: ‘All I wanted to be able to do is take Isla out. It worked wonders. I am more or less back to normal.’
我所想要的只是能夠帶她出門,我現在差不多和以前一樣。

Sam Ramsey collapsed when out celebrating her 22nd birthday and six weeks later was paralysed from the neck down by MS.

另一位患者:Sam Ramsey在她22歲生日後6周,因為MS造成她頸部以下癱瘓。

Other treatments failed but now, after the stem cell treatment, Miss Ramsey, 25, of Newark in Nottinghamshire, can walk on crutches, has passed her driving test and ordered a car.
Sam Ramsey試過很多其它的治療方式,但是也都失敗了,幹細胞治療讓她現在可以藉由助行器行走,也拿到了駕照。

She told the Sunday Times: ‘This treatment has given me my life back.’
'This is not a word I would use lightly but we have seen profound neurological improvements.’

However, more research is needed to prove the patients are not just experiencing a temporary remission, which does happen in MS.
然而,需要更多的研究來證實這不只是緩解的情形。

The neurological condition, which is more common in women than men, usually strikes those in their 20s and 30s and affects 2.5million people worldwide, including 100,000 Britons. It can cause blindness and paralysis, but current drugs are not suitable for all and there is no cure.
全球有250萬人,英國就有10萬人深受其苦,目前沒有解藥。

The disease occurs when ‘friendly fire’ from the body’s immune system destroys myelin, the fatty protective sheath around nerve fibres in the brain and spinal cord, disrupting the transmission of vital signals.
The Sheffield treatment uses the stem cells to ‘reboot’ the immune system so that it stops attacking the body and brain.

療程步驟如下:
First, a sample of the patient’s blood is taken and stem cells are removed from it and stored.
第一:抽取病患的血液,並從其中提取出幹細胞進而儲存起來

The patient is then given a high dose of chemotherapy to wipe out their faulty immune system. 
第二:病患須經過一個非常高劑量的化療過程,目的是把現在的免疫系統完全摧毀。

Finally, they are given their stem cells back. As master cells, they are able to form a new, healthy immune system.
最後:再把儲存的幹細胞注射回病患自己,重新啟動新的免疫系統。

The transplant has a one-off cost of around £30,000, similar to the amount spent on some patients’ drugs each year. 
幹細胞療程費用需要3萬英鎊,約150萬台幣,30萬人民幣,這費用相當於多發性硬化症病人一年的醫療費用。

As well as stopping the disease in its tracks the treatment, known as autologous haematopoietic stem cell transplantation, seems to heal damage that has already been done.
自體造血幹細胞移植療法似乎不僅可以停止疾病的病程,甚至可以修復已經受傷的部位。

以下列出其他MS例證
A man who was blind in one eye has almost normal vision again. 
失明的眼睛重現光明

A woman in Canada who needed 24-hour care appears free of MS more than a decade after being given a transplant of her own stem cells.
24歲的加拿大女性治療前需要24小時得看護照顧,現在已經有10年沒有再復發。

Despite these dramatic improvements, the treatment is not suitable for all patients.
這種治療並不適用每個病患。

 A US trial on almost 150, reported last month in the Journal of the American Medical Association, showed it to help roughly half the time.
在美國的實驗性結果報告顯示:150個實驗中,只有半數75人有幫助

There are also concerns about complications including potentially lethal infections.
過程中也會有致命的危險(一但感染)。

Professor Sharrack and colleagues are seeking patients with relapsing-remitting MS, the most common form, for an NHS-funded trial.
目前英國國民保健服務處(NHS)教授 Sharrack 團隊正在募集較規模的實驗。
The MS Society described the Sheffield work as ‘very encouraging’ and said it is eagerly awaiting the results of larger trials.

Read more: http://www.dailymail.co.uk/news/article-2974675/MS-stem-cell-treatment-hailed-miraculous-patients-make-dramatic-recovery.html#ixzz3TF2Zd6ml 
附上幹細胞治療影片簡介


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2015年3月1日 星期日

一個全面性的疾病:MS多發性硬化症 (歸零Reset的人生)

一個全面性的疾病:MS多發性硬化症 (歸零Reset的人生)

原來MS也有失憶(阿茲海默)或認知困難的副作用(貼此文不是要造成恐懼,而是要讓大家認識)。其實MS造成腦部損傷,有機會會有帕金森氏症以及阿茲海默症的"副作用" 或併發症,但是不一定會發生。我在急性發作的時候也曾經有短期記憶消退,常忘東忘西,必須要依賴紙筆記錄的習慣。腦袋卡卡(BOY GAGA or LADY GAGA)以下三連結探討這部分的實例。

http://www.nownews.com/n/2013/09/30/982263
罕病/美國一女子一覺醒來 竟然丟失了17年的記憶


http://forum.yam.org.tw/bongchhi/old/light/light243-3.htm
一場不斷喊停的音樂會(北部病友的故事)

http://www.ntuh.gov.tw/…/%E5%A4%9A%E7%99%BC%E6%80%A7%E7%A1%…
多發性硬化症的認知退化 臺大醫院

我們都不知道未來會發生什麼事,只能祈禱好好的活著,健康的活著。只要保持正常作息,不要太刺激自己,All is well. 每天笑一笑,天天沒煩惱。

附上一部電影,討論失去記憶的人。

【我想念我自己】Still Alice

 


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