Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Wednesday, August 04, 2010



(this was me in the mid-80s)



My Tysabri Diary...

I had my 50th Tysabri infusion yesterday (50th? Yep, that's right-50)..., I'm still a little tired so I'll make this post short and sweet...,

I met two other current Tysabri patients at my infusion center yesterday, one was a young girl of 22 and doing great on Tysabri (she has been on it for a year now), all of her prior symptoms of numbness and tingling in her hands, in her feet, terrible balance, slight optic neuritis in her right eye, and a complete numb right side from her rib cage down, and severe cognitive problems have all cleared up 100% - with the exception of her cognitive problems, they've only cleared up about 75% at this time, but she notices every day she seems to get better and better, she was so happy to be on Tysabri!

The other lady that I met there was on her fourth Tysabri infusion (she is 100% wheelchair-bound at this time), and she was around 45 years old (I don't know how long she has had MS), but she also had terrible tremors all over her body when I first met her in the morning. I really didn't get to talk to her because I was busy being interrogated (LOL) by the young lady's mother that was there, and both of them were so excited about Tysabri.

But back to the other lady that met there, when her time was up (infusion and observation time), her husband came to pick her up and had her wheelchair ready for her, and she stood up unassisted for about 10 seconds before she sat down in her wheelchair and her body tremors has significantly subsided. She was so happy, she started to cry and everyone else there in the infusion center was crying and clapping at her small achievement! Man oh man, I just cannot put into words how wonderful it was to see her smiling, crying, laughing, and the look of hope on her face was absolutely indescribable, and before they said goodbye, she yelled out "I can hardly wait until I get my 5th infusion!!!" (LOL-I definitely knew that feeling! LOL).

Lastly, I received the following information from my friend Andre that created the "Fly for MS" website:

"I think you will be excited: in less then four weeks, we have managed to gain the official, active support of the National MS Society, the MS International Federation, and of virtually all the MS societies in the 28 countries we plan on visiting. Together, these countries account for 1.4 million people with MS, or 70% of all people with MS worldwide. "Fly for MS" stands to be one of the most impactful MS awareness events ever organized.

Just a week after launch, our website
(www.flyms.org) received visits from 41 countries around the world, as far as Australia and Indonesia, without any advertising or even a press release.

Also, we are now incorporated as a non-profit charity, with 501(c)(3) Federal tax exempt status filed.

Also, the NMSS will feature us on their webpage, which generates 500,000 hits a month, once we have the dates firm."

Pretty neat, huh?

Because I'm still a little tired, I'm going to go have a late lunch, so that's all for now..., until next time everyone, take care of each other...,

((((hugs))))

Love, Lauren :)

5 Comments:

  • At 11:14 PM, Anonymous Anonymous said…

    Hi -- I am considering switching from Beta Seron to Tysabri. I have not had any problems with BetaSeron but my doctor thinks that I should try Tysabri. I am kind of apprehensive what are your thoughts in a nutshell?

    Thanks!
    Papillion

     
  • At 11:41 AM, Blogger Lauren said…

    Hi Papillion,

    If your doctor thinks that you should try Tysabri, he/she is probably concerned that Betaseron is no longer working for you and/or you need a more effective DMD such as Tysabri.

    The ABCRs are effective at preventing further relapses and slowing the disease process down by 29% to 34%, whereas Tysabri has been proven to be 68% more effective in preventing further relapses, slow in the disease process down, having minimal to no side effects (as reported by many Tysabri patients), and has been proven to improve a patient's Quality of Life, among other things.

    What exactly is there to be apprehensive about?

    A friend of mine just called me after her first Tysabri infusion that she had three days ago..., she has had MS longer than me (for more than 35 years), and three days after first infusion, she woke up that morning and could feel her feet after eight years of them being numb!

    One should not be apprehensive about Tysabri unless their immune system is severely suppressed. Doctors can check the immune system to see whether or not it is very low/weakened or if it is strong. This can be done by a very simple blood test called the ELISA test.

    If you have further questions/concerns, you can either write to me at:

    LGLBGL2003@aol.com

    or you can discuss Tysabri further with your doctor. (Just remember, I am not a doctor).

    I'm sending you all my best and good luck with your decision! Please let me know what you decide, okey-dokey artichokey?

    Lauren :)

     
  • At 10:20 AM, Blogger deej said…

    Hi Lauren, I will be getting my Tysabri infusion #50 on 8/13. I have progressively been getting worse, don't feel the poisitve "bumps" after infusions like in the past. But I am scared to stop taking it. What are your thoughts about CCSVI?

     
  • At 1:12 PM, Blogger Lauren said…

    Hi deej,

    Thank you so much for your comments, and I'm so sorry you are not feeling the same "bump" that you use to after your Tysabri infusions.

    With regard to CCSVI, I think it is too early to tell whether or not this surgery will help all people with MS because apparently CCSVI can occur before MS. We all have to remember that Dr. Zamboni's patients totaled only 46 patients (some with MS and some without MS), and there are currently estimated to be 400,000 patients in the United States with MS. There has also been serious adverse events associated with the surgery, including death, and Stanford University halted their CCSVI treatment/surgery trials due to same.

    I hope and pray that the connection between CCSVI & MS can be made and that a cure can be found, but is this surgery the cure for MS? I have no doubt that some patients with MS have definitely had wonderful results from the surgery, but I also believe that more worldwide larger controlled trials need to be investigated first, as well as the vast results/conclusions that are reached before we can make that leap of faith, but remember, this is only my opinion..., here is what the NMSS has to say in part, the full article can be found at the link below, Lauren:

    "Endovascular surgery, like any surgical procedure, carries some risks. This does not mean that it would not be considered as a potential treatment in the future if further research provides evidence of its possible benefit. We need to determine if treating CCSVI improves symptoms or changes the course of the disease in any way. That is why the Society is leading research efforts to determine how CCSVI may be involved in the MS disease process. To get the quickest answers and most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, it is prudent that such surgery be performed as part of controlled trials, especially in light of adverse events reported to date.

    Prospective candidates should know that there have been reports of CCSVI surgical procedures resulting in adverse events, including one reported death. According to the Annals of Neurology and the Wall Street Journal, the person died of a hemorrhage in the brain while taking a blood thinner (anti-coagulant), which is commonly prescribed when stents are inserted into blood vessels. In another individual, a stent dislodged and moved to the heart, requiring emergency open heart surgery to remove the device. MS endovascular surgery was halted at Stanford University after these two adverse effects occurred. Other possible risks include: infection at the puncture site; damage to the blood vessel, which could lead to the formation of clots; and internal or external bleeding if anti-coagulants are used."

    http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206

    Again, these are only my opinions. Let me know if you decide to be tested for the CCSVI surgery, okay?

    Take care now - Lauren :)

     
  • At 9:42 AM, Blogger Deb said…

    I appreciated seeing your photo from the 80s! Please feel free to include former photos of yourself in the future. I also always look forward to your monthly comments on your blog. You never disappoint. Enjoy the early fall and thanks again for your cogent answers to questions.

    Deb

     

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