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12月23日 星期四

祝大家耶誕快樂,希望大家都能夠獲得和Tim Donovan一樣的耶誕禮物

Christmas is going to be different this year for Tim Donovan.
This year's holiday season will be different for Tim Donovan. It's going to be the first Christmas since the Fredericton Junction councillor underwent a new treatment for multiple sclerosis at a private clinic in the United States. Donovan said the liberation treatment, which isn't available in Canada, has helped improve his mobility and energy level.

It will be the first holiday season the longtime Fredericton Junction councillor has enjoyed since family, friends and neighbours raised more than $10,000 to help him pay for the liberation treatment - a new procedure for multiple sclerosis patients that has yet to be approved by Health Canada.

Researchers across the globe are conducting trials to determine whether this procedure is an effective way to treat MS.

A growing number of Canadian MS patients have enjoyed varying degrees of success after undergoing the liberation treatment outside of the country, except for one Ontario man who died after having the procedure done in Costa Rica.

Donovan and thousands of other Canadians with MS have been travelling to clinics in places such as the United States, Bulgaria and Mexico to have the treatment, which involves improving the flow of blood through a patient's veins.

Donovan, who was diagnosed with MS more than 23 years ago, said the changes in his life have been remarkable since having the procedure in August.
He said his mobility and balance have greatly improved, he has more feeling in his extremities and his energy level has jumped.

He's looking forward to spending quality time with his grandchildren over the holidays.
"They have their grandfather back. They used to go to the hospital every year to visit me and wonder if I was going to die," he said.
The past few Christmas holidays have been difficult for Donovan, who often missed most of these special moments due to a severely depleted energy level.
But he's expecting Christmas morning to be different this year.
"We always go to my daughter's home and we spend Christmas Eve and Christmas morning with the kids. Last year, I'd get up with them, watch them open their gifts and then I'd go back to bed. This year, I can stay up. That's a big deal to me," he said, a broad smile spreading across his face.
"The kids aren't saying, 'Where's Grampy?' "

And thanks to more energy and better co-ordination, he's already received a special holiday gift.
"Last year, the doctor told me he didn't think I'd walk again and he took my driver's licence away. Last month, I got it back," he said.
"So that's my early Christmas present - I got my driver's licence back."

Donovan said he knew he was feeling stronger, but he wasn't certain what the driver examiner would think about his improved abilities.

"I told the driver examiner that I have MS and, 'The doctors think I might need a (left-foot accelerator pedal) and I want you to take me out and if I'm not safe, I don't want my licence,' " he said.

"He took me out for 45 minutes - on highways, (curved) streets and, at one point, a child even ran out in front of me and I just stopped like anybody would. He said, 'There's nothing wrong with your driving.'

"He gave me my licence. I remember when I first got my licence at 16. It was terrific. It felt just like that."

He said he's thankful that his community helped him pay for the costly treatment and he believes it's promising that the new Progressive Conservative government has already committed money to exploring this emerging treatment option.
Donovan said the growing optimism he discovers while talking to New Brunswickers about his experience will keep his spirits high.

"I like to make the joke that I'm not a soap dispenser - I'm a hope dispenser," he said.

"I talk to people every day about what's happened to me. I'm not saying I'm a doctor or that I know everything about it, but I can speak about what's happened to me.
"I hear their stories and it makes me want to keep fighting (until this procedure is available in Canada)."堤姆說:『我聽了很多其他病友做過靜脈擴張手術的故事,而就是這些故事讓我想要繼續和多發性硬化症奮戰下去』

4 則留言:

  1. 在新年即將來到的時候,祝大家新年快樂,萬事如意!

    在這裡,好像沒有看到有人提到LDN治療MS,實際上是一種非常簡單有效的治療方法。LDN= low dose naltrexone. naltrexone 在中國稱為“納曲酮”,不知道台灣如何命名,這是戒毒治療藥物。我使用後感覺效果很好,非常便宜,簡單口服,幾乎沒有任何副作用。

    Over the past few years, growing experience with the clinical use of LDN demonstrates its consistency in preventing further attacks in people with MS. In addition, a majority of such patients note reductions in spasticity and fatigue.

    In preparing a proposed clinical trial protocol for the use of LDN in the treatment of multiple sclerosis, Dr. Bihari assembled the latest data from his clinical practice. As of May 2004, Bihari has almost 400 patients with MS in his care. Of that group he knows of only two patients who showed signs or symptoms of new disease activity over the years while taking LDN treatment.

  2. 感謝曉昌提供的資訊,不過很可惜,目前在台灣並沒有這一項(特別是低劑量的藥物)低劑量的納曲酮主要劑量在1.5mg~4mg之間,之前有一位加拿大病友也提供這個訊息。



    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.


    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.

    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


  3. 的確,一般的納曲酮是每片50mg,但是MS患者服用的LDN一般每天3mg。最初美國也只有50mg劑量,後來為了方便MS患者,有人生產3mg劑量。但是,許多MS患者是這樣使用50mg劑量的,就是把一片50mg納曲酮分成16份,每天吃1份即可。當然這1份非常小,就像芝麻粒一樣。也許你會發現自己不太容易分得非常均勻,我發現不必分得非常均勻,大概均勻即可。有一種方法可以分得均勻,就是用一個微電子天平去計量,先計量出50mg的重量,然後可以算出1/16的重量,每次吃1/16即可。但是我發現後一種方法很麻煩,最終放棄。

  4. 還有患者是這樣做的,即把50mg先分成4份(這一步很容易),再把1/4(12.5mg)溶於4ml或者8ml水中,每次服用1ml或者2ml即可。當然,我還是覺得麻煩一些。