Living With MS

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

Sunday, February 25, 2007

My Tysabri Diary...

I have mentioned this video to other MS patients considering Tysabri, and it bowled them over... go to:

and please take specific note in the corresponding transcript, which states:

FREDERICK E. MUNSCHAUER, MD: There were two large prospective clinical trials using natalizumab, which is also known as Tysabri…And, at the end of those trials, when the patients were coming off after two years, it was quite clear that Tysabri was indeed the next generation of MS therapy.

People had fewer exacerbations, a 68% reduction in exacerbation rate, essentially twice as effective as any of the interferons or Copaxone. And a 42% reduction in the probability of going on to sustained worsening in physical impairment, as measured by one of our scales

ANNOUNCER: The new rules call for the use of natalizumab in cases where patients have failed on other medications. But there remains some room in the guidelines for doctors to use the drug initially, in some very aggressive cases of MS.

ROBERT FOX, MD: And so that wording is that it is generally indicated for patients who have not responded or who have not tolerated standard, injectable therapy. And that leaves open the option for clinicians to use it as a first line therapy in patients who we don't feel comfortable waiting the six or 12 months waiting to see if an injectable therapy will work.

FREDERICK E. MUNSCHAUER, MD: Clearly, nobody wants to see you get a 1 in 1,000 chance of having a potentially fatal viral infection. However, when balanced against the disease itself, then the be- -- then the risk-benefit equation clearly shifts in favor of allowing patients and physicians to make the choice, depending upon their perception of the relative risk."

Do you all see now why the FDA approved Tysabri as a first line AND/OR second line therapy [DEFENSE] for MS?

I will reiterate my opinion that the risk of PML is probably much lower than 1 in 1000, IF the patient has a confirmed dx of MS, is given Tysabri as a monotherapy, and is not immune compromised....the TOUCH protocol is in place to minimize such risk. Should we (MS patients) be blessed enough to fall into the acceptable categories of Tysabri's TOUCH protocol, I still believe our chances of getting hit by a moving bus are greater than ever of developing PML!

Okay time for my p.t. exercises. Have a terrific upcoming week everyone :)

(((hugs))) Love, Lauren A very proud member of

PS: Dr. Robert Fox's presentation (for me) was kinda difficult to follow as he is SUCH a hottie! Talk about EYE CANDY - (whew, fanning face - oopsies) ;) LOL

Friday, February 23, 2007

My Tysabri Diary...

Brief update from me...
I would encourage all Tysabri users to send a brief (or long) progress report to: This will help many MS patients looking for information about how other MS patients are doing on Tysabri therapy :)

Also, my friend, Stuart Schlossman, is running his 2nd "Un-Official Tysabri Poll" which ends on March 15, 2007. I would encourage all Tysabri users to take his poll by going to:

and copy and paste the following questions (with your answers) in the comment section.

Questions for his Tysabri Poll:

Your Name:

Your email address:

Your Location:

How long ago Diagnosed with MS?

Are you diagnosed with RRMS (Relapse Remitting)?

If not, please provide your current diagnosis:

Have you noticed a progression of your disability since being diagnosed?

If so, to what extent?

Prior to Tysabri, which MS (FDA approved) medications had you used?

In what order, in what order and for how long and with what results?

Why did you decide to switch to Tysabri?

When (in 2006/2007) did you begin taking Tysabri?

How many infusions have you now had since Tysabri re-commenced in June 2006 ?

Had you previously been on Tysabri? If so, when and for how long?

How long did it take for you to get started on Tysabri once you decided you wanted to start?

Has the infusion process gotten easier for you?

What favorable remarks do you have since beginning Tysabri Infusions?
(ie: infusion process, fatigue factors , strength, pain, walking ability, etc.)

Do you have any negative comments to inform to others?
(if yes, please explain) (ie: infusion process, side effects, etc.)

What are your expectations of Tysabri ?

What if anything have you heard from others, who are using Tysabri?

Do you have any other comments:

______end of survey

* Can I have your first born? <---laughing - I'm just kidding (wink) ... Stu will probably kill me for listing a joke question in his poll - but I did add a (*) !

*not in original survey (some parents were probably muttering to themselves, "darn it!") - lol - take care all :)

A very proud member of

Tuesday, February 20, 2007

My Tysabri Diary... alllllllllllllrighty then!!!

When I woke up today, after my 5th infusion yesterday, I felt like taking on THE WORLD! Of course, I can't, but I felt like I wanted to - God I LOVE these first few days after my infusions - what a Rush!!! I feel like I've regained my old self - my spirit for living - once again, that my disabilities keep weighted down. Heck - I even beat my caregiver Ray in starting my physical therapy exercises! He was yelling, "Slow Down Woman!" And I yelled right back at him, "Keep Up Slow Poke - Whatcha Waiting For - Christmas?!?!?" - LOL

I can move my feet again, (not much - but a little bit) and can reposition my legs once again (a little bit) without using my hands! I can even hold my coffee mug (it's BIG and HEAVY) and take a sip from it without holding on to anything and not falling over!

It's amazing what we all take for granted in our lives...the simple things - I'm loving being able to do the simple things again - and I want more - I'm gonna walk again dammit!

I feel pretty again, even though I'm not anymore, but THANK YOU TYSABRI!!!!!!!!

Okay, I'll shut up now, (heehee)
Love, Lauren :)
A very proud member of
My Tysabri Diary...

5th Tysabri Infusion yesterday on 2/19/07...

I was pretty tired due to us having to drive in torrential rains for 90
mins. to get there for my infusion, and I have a nice bruise on my wrist
delivered by a prick (that term works for both the male infusion nurse
and the needle - owieee), so I turned in early...but I did want to report
that I inquired again of the Infusion Admin if the 'other' Tysabri patients
had been infused there yet (from my Jan. inquiry), and she said, "Oh yes
several have - no problems either".......WOOOOOHOOOOO!

Also - here is my comment posted on the Utah (Tysabri) story-

you can vote and comment too (this story should get a lot of publicity)
The reporter already posted a correction and a comment (smiling)...

Report Comment by Lauren R. @ 8:32pm - Mon Feb 19th, 2007
The KSL reporter wrote: "Darren was given what is called the Tysabri therapy.
Physicians have been trying it for a few years now. It doesn't work for all M.S.
patients, but for some, like Darren, the chemo infusion really pays off."

Please note: Tysabri is NOT
chemo-chemo destroys B & T cells, basically wiping
out the immune system.

Tysabri destroys nothing, it is a Selective Adhesion Molecule (S.A.M.) that
attaches itself to the damaging T cells that attempt to cross the Blood Brain
Barrier and enter the Central Nervous System where they attack our myelin,
leading to nerve damage and axonal loss (disability) for most of us. However,
since Tysabri can successfully prevent a majority of them crossing the BBB, this
stops the cascading effects of the T-cells from bombarding our CNS and if some
of the T cells are able to make it through the BBB, Tysabri is able to migrate
(move) them away from our myelin adding double protection there too.

Classifying Tysabri as 'chemo' does a terrible disservice to MS patients looking
for information on MS therapies. I have had 5 Tysabri infusions thus far.

For accurate and correct info re: Tysabri - including Tysabri Patient Progress
Reports, go to: am delighted at
Darrel's recovery, but terribly disappointed in your reporter's "research".

Sincerely, Lauren Roberts (MS sufferer for 31 years).

I'll post again when I catch up on my sleep.

Love, Lauren
A very proud member of

Wednesday, February 14, 2007

My Tysabri Diary...

Happy Valentine's Day to all of you - I hope you are enjoying this romantic day and evening with the one you love instead of reading my words over the internet.

Today has been hard on me emotionally, as yesterday I received my final divorce decree in the mail, ending my 26 year marriage, and I just started crying. Don't get me wrong - I was the one that filed for the divorce, and I was not crying over my ex - I was crying over all those years I wasted on the him, 26 years down the drain.

Of course I have friends that I love, and they love me. But it's not the same kind of love. Last night I tried to occupy my time and thoughts by helping others on the various MS message boards, and it did, for a while.

Then came this morning, and a wave of sadness engulfed me once again....
Valentine's Day...and I started crying again as I reminisced about all the wonderful-romantic days we had shared over the years, and how we built our lives together, the struggles, the triumps, and everything in between, now forever gone. I found myself for a split second resenting not only my ex, but also those in love - and I had to stop myself from going down that road which only leads to a 'pity party'. He already ruined my memories of the love we shared in the past - I was not going to allow him to ruin one minute of my future.

As a friend of mine put it - our marriage had a 'shelf-life', and it has now expired. I reminded myself that "Our todays are only our stepping stones for our tomorrows".

My caregiver, Ray, even went out and bought me the cutest stuffed doggie for my bed, and it matches my quilt colors, and it's BIG too. When my kitty jumped up on the bed and saw it - she attacked it and then ran outside. I started laughing so hard that Ray came in and asked, "What's going on in here? Your cat just bolted out the door like she saw a coyote licking it's chops!" That cracked me up even more when I explained to him what she did to the stuffed doggie on the bed, and I said, "Maybe she heard the stuffed animal mutter under his breath, LUNCH!" - LOL

Short pity party, eh?

Anyway, I am having my 5th Tysabri infusion on Monday, 2/ that I'm excited about, woooohooooo!

Much love to you all,

****»*«****{{{ Happy Valentine's Day! }}}****»*«****

Love, Lauren

A very proud member of