Living With MS

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

Wednesday, July 21, 2010

My Tysabri Diary...

Hi everyone, I recently had the pleasure of speaking with the founder of "Fly for MS",
Andrei Floroiu, and I am proud to inform anyone interested in MS awareness (i.e., MS patients, caregivers, family members of MS patients, friends of MS patients, the medical community, etc.) that there is a fantastic site entitled "Fly for MS" which can be found by going to:

"Fly for MS"
is a record-making endeavor meant to raise awareness for multiple sclerosis (MS) in the US and Europe. Their pilots will take off from New York aboard a small plane for a trans-Atlantic journey spanning 20,000 miles (32.000 km), almost enough to circle the globe, taking them to 27 countries in five weeks. The undertaking will be very challenging for both man and machine: fewer than 300 people have flown a small plane for such a distance on a single journey, compared to over 4,100 successful climbs on Mt. Everest.

Also, their FaceBook group is up as well; just search for "Fly for MS", click "like".

During the journey, they will fly for treatment MS patients who cannot reach distant MS centers, and share the joy of flying with other patients.

Also, they will offer broader audiences concomitant online broadcasts and traditional media coverage of the fascinating sights and diversity, the happiness and human drama, and the very real challenges and risks they will encounter. The endeavor will be recorded in real-time by one of their crew, a noted photographer, journalist, and director.

Their website goes on to state: "MS is in dire need of increased awareness. It is an "invisible" disease caught in a vicious circle: public ignorance forces MS sufferers to withdraw, thus becoming invisible to the rest of us, perpetuating the ignorance. Our headline-grabbing endeavor will generate the public opinion impact needed to inform and to get governments, employers and society in general to change their attitudes towards MS sufferers. We will also inspire and give hope to those touched by MS."

I would highly encourage everyone that has been touched by MS to visit their website. They now have all the largest MS organizations in both the US and Europe, at the highest levels, supporting their effort.

God bless those that actually cared enough to take on this endeavor of "MS awareness" for those of us living with MS.

((((hugs to all))))

Love, Lauren :)

Wednesday, July 07, 2010

My Tysabri Diary...,
I just posted the following on a very popular MS board:

Congratulation Sean, I was sick every weekend from Avonex, and Copaxone did nothing for me, so I'm glad to be rid of the shots altogether.

I just completed my 49th Tysabri infusion yesterday, so I'm a little tired, and will probably just have a light dinner and turn in for the evening.

SaLe: I'm so sorry that this happened to you, but temps can sometimes do really stupid things such as what happened to you. Just let your husband complain to the infusion Center's administrator and then let it go, because you don't need any additional stress in your life, nor do you want to develop the "reputation of being a difficult patient" at the infusion center. Of course, this is only my opinion from being a certified paralegal for more than 26 years.

To Eagle:

You asked, "- What happens if after I begin the Tysabri, my body begins to produce antibodies to the Tysabri too? "..., if that should happen, your neurologist will probably take you off Tysabri, but to be honest with you, Copaxone is the least effective of the different DMDs (Avonex, Betaseron, Rebif, and Tysabri).

"- Does anyone else have a port to receive the medication through? I was told I might be a good canidate for a port because of all the steroids I have received in the past six months have messed up my veins and I am considered a "hard stick patient."..., I don't have a port, but some people do, and they love it

"- How in the world am I going to be able to afford it? I have just landed my first job. I will be starting in August! I will be a Second Grade Teacher. I will barly be able to pay for my medical bills and the general cost of living. So is Tysabri really as expensive as I am scared it will be?"..., first of all, Tysabri is not expensive-it's less than twice the cost of the different DMDs-it is the infusion which can be expensive-plus,Biogen has different programs to assist patients that cannot afford Tysabri. Once you enroll in the "Touch" program, you should discuss these different programs with your assigned Tysabri Case Manager. Also, if you have "Major Medical" on your insurance policy, the medication and the infusion should be covered 100% under that provision.

"- I am only 22 years old. Do I really want to risk taking a medication that may cause PML?"..., you will only be at risk for developing PML if your immune system drops too low and cannot fight off the "activated" JC virus [which is what causes PML], if you actually carry the dormant JC virus. There are various tests [the ELISA test] which can be run to check the status of your immune system, and there is also a test which can determine whether or not you carry the dormant JC virus, and a test through Eugene Majors' lab at the NIH to determine whether or not you carry the PML virus. There is also plasmapheresis exchange to rapidly remove Tysabri from your system should you carry the PML virus.

But it is always best to discuss these different options with your treating neurologist. I hope that some of this information helps calm your fears.

All my best to everyone here, Lauren Cool

((((hugs to all))))

Love, Lauren :)

Monday, July 05, 2010


My Tysabri Diary... A very happy belated Fourth of July to everyone...,

I watched the entire HBO series "John Adams" over the weekend, and it really brought to light the true meaning of the doctrine "The Declaration of Independence", and it honestly gave me a new appreciation for celebrating the Fourth of July holiday.

Hopefully, everyone had a safe and glorious holiday..., tomorrow I go for my 49th Tysabri infusion (gosh, have I really had that many already?). Seems like I just started this therapy only a few months ago, and yet, I've been on this therapy for more than three years, whoa! :)

I'll report back later this week after my infusion..., take care everyone!

((((hugs to all))))