Tysabri


Tysabri, also known as Natalizumab, is a once a month infusion for MS. It works differently than other MS meds by blocking white blood cells from entering the brain and spinal cord of individuals, or across the ‘blood brain barrier’. This is believed by many doctors to be a big factor in the damage caused by MS. Tysabri can cause many side effects, and for some they can be worse than for others. The common side effects are headache, fatigue, joint pain and depression. Often these can be mitigated by taking Tylenol prior to your infusion.
The history of Tysabri has been filled with controversy. After being approved for MS by the FDA, it had to be pulled due to patient deaths due to PML (progressive multifocal leukoencephalopathy ). PML is a very rare brain infection that usually leads to death or severe disability. Currently there is no treatment or cure for PML. PML has several risk factors including 1. Being positive for antibodies for the JC Virus 2. Prior use of immune-suppressants 3. Length of time taking Tysabri. The JC Virus is a common virus that many people have antibodies for (50-60% of people). But in individuals who have weakened immune systems, it can lead to PML. Many people still take Tysabri even if they are positive for JC Virus antibodies, that is a very individualized choice that each person has to make on their own. Due to the significant risk factor of PML, a database was created to follow every patient who is taking Tysabri called the TOUCH Program. Prior to a first infusion, an individual and their doctor must register with the program and will be contacted periodically to see how treatment is progressing. Because Tysabri has such a high risk, it was thought of for many years to be a drug that was used when others were not helpful, or as a last resort.
When I was presented with the idea of Tysabri several years ago, it initially scared the crap out of me. The idea that I had progressed to the next ‘level’ of meds, that my MS had become no longer able to be managed on other meds, that my doctor was calling it ‘aggressive’. But in reality it was aggressive. I had 3 relapses in a year and a half. When my doctor described the lesions of the last one he said they ‘aren’t subtle’. That really shook my husband and I. First, before any thoughts about the drug itself, I wanted to know if it was JC positive. That would direct my thoughts. Turns out I wasn’t, (but I keep getting tested every 6 months or so). What was I to do? I researched. A TON. And I found a very interesting trend. In the patient stories I found, they were literally back and forth, good to bad. One person said it was the worst experience of their life, then the next person said it saved their life. I discovered that it would be just like everything else, individualized. There would be no way of telling how I would react. My doctor was strongly recommending that I take it, he went so far as saying if it was his family, he’d feel comfortable telling them to take it.
In September of 2014 I started Tysabri. I can say it has been the best medication for MS I’ve done. The side effect I had most was fatigue. For the first 6-8 months, after the infusion I was EXHAUSTED. Just junk. But eventually that subsided. Now, I am able to have the infusion and go about my day. It is nice not having to think about medication daily. In terms of MS symptom management, I think it helped about 70-80%. I still was feeling pain, numbness and burning. But once I went strict AIP, everything went away 100%. I think Tysabri gave me a boost, then AIP took me the rest of the way.
Obviously there are many risks involved with Tysabri, that I still think about. I still continue to monitor my JC virus status, and if that changes someday then I’ll have to re-evaluate my status with Tysabri. I’m not sure if I’d continue with it if I was ever positive. I know many people do, but I don’t know if I would be comfortable with that. I guess I’ll have to cross that bridge if I ever get there.

I’M ALISSA!

I help women who have also been diagnosed with Multiple Sclerosis make specific and personalized diet, lifestyle & subconscious changes so that they can begin to heal their body, reduce disease symptoms, and return to a life they love.hey there,

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This is what came through during my meditation this morning.

I’ve been feeling so BEHIND lately..
That I’m not doing enough..
That progress isn’t happening fast enough..

But that’s a lie.
I’m right where I should be.

I needed this message today… maybe you do too?

This is what came through during my meditation this morning.

I’ve been feeling so BEHIND lately..
That I’m not doing enough..
That progress isn’t happening fast enough..

But that’s a lie.
I’m right where I should be.

I needed this message today… maybe you do too?
...

14 4
This is how I slowly helped myself the most:
Making small changes to my life,
* Intentional awareness to my morning
* Noticing when I’m being mean to myself 
* Noticing when I’m reactive or in a state of fight or flight..

Some “small” ideas for you too:
* don’t grab your phone first thing in the morning, take some deep breaths, think about how you want your day to go
* drink an extra glass of water (bonus if it’s in the morning too)
* get up and move every hour
* say something nice to yourself when you catch yourself being mean
* step outside for a few minutes a few times a day

Small changes add up to big steps forward,
don’t get fooled by these not being “enough”,
they absolutely are. 

Wanna hear more about how Ive helped myself and my clients to lessen our MS symptoms so we feel better in our bodies?

I detail it in my chapter in Resilience Redefined.. comment “Book” and I’ll send you the link!!

This is how I slowly helped myself the most:
Making small changes to my life,
* Intentional awareness to my morning
* Noticing when I’m being mean to myself
* Noticing when I’m reactive or in a state of fight or flight..

Some “small” ideas for you too:
* don’t grab your phone first thing in the morning, take some deep breaths, think about how you want your day to go
* drink an extra glass of water (bonus if it’s in the morning too)
* get up and move every hour
* say something nice to yourself when you catch yourself being mean
* step outside for a few minutes a few times a day

Small changes add up to big steps forward,
don’t get fooled by these not being “enough”,
they absolutely are.

Wanna hear more about how Ive helped myself and my clients to lessen our MS symptoms so we feel better in our bodies?

I detail it in my chapter in Resilience Redefined.. comment “Book” and I’ll send you the link!!
...

21 5
You don’t always have to love the hard action you’re taking to reach your goals.

You just have to show up.

You can do this… keep going 🧡🧡

*after discerning there’s no *actual* issue (pain, injury, illness etc) preventing me from working out, only that I’m a toddler and don’t wanna.

You don’t always have to love the hard action you’re taking to reach your goals.

You just have to show up.

You can do this… keep going 🧡🧡

*after discerning there’s no *actual* issue (pain, injury, illness etc) preventing me from working out, only that I’m a toddler and don’t wanna.
...

27 4
“Resilience is the process and outcome of successfully adapting to difficult or challenging life experiences, especially through mental, emotional, and behavioral flexibility and adjustment to external and internal demands.”

Resilience has become such a cornerstone word of the work I do this past year. 
It makes sense this book I collaborated on with 6 other awesome & resilient authors was destined to have resilience in the title.

Did you see??

Pre Orders are open!

If you pre order your copy through me before October 24th you’ll also get:
• Signed copy of Resilience Redefined
• The MS Handbook E-book
• Resilience Bookmark
• LissMS Sticker Pack (first 10 pre orders)

Grab your copy here: 

https://liss-ms.com/product/resilience-redefined-thriving-with-autoimmune-disease/

Or comment Book below and I’ll send you the link!!

“Resilience is the process and outcome of successfully adapting to difficult or challenging life experiences, especially through mental, emotional, and behavioral flexibility and adjustment to external and internal demands.”

Resilience has become such a cornerstone word of the work I do this past year.
It makes sense this book I collaborated on with 6 other awesome & resilient authors was destined to have resilience in the title.

Did you see??

Pre Orders are open!

If you pre order your copy through me before October 24th you’ll also get:
• Signed copy of Resilience Redefined
• The MS Handbook E-book
• Resilience Bookmark
• LissMS Sticker Pack (first 10 pre orders)

Grab your copy here:

https://liss-ms.com/product/resilience-redefined-thriving-with-autoimmune-disease/

Or comment Book below and I’ll send you the link!!
...

14 0
Struggling to start with exercise?

Try this tip!!

Creating a new habit (any of them) necessitate us to become someone new, someone different than we were.

Because we’re trying to do something different after all.

This is gentle way of starting that identity shift process.

Become who you want to be in your mind first.

Does this help?
What other habits do you need help with? Let me know in the comments!!

Struggling to start with exercise?

Try this tip!!

Creating a new habit (any of them) necessitate us to become someone new, someone different than we were.

Because we’re trying to do something different after all.

This is gentle way of starting that identity shift process.

Become who you want to be in your mind first.

Does this help?
What other habits do you need help with? Let me know in the comments!!
...

31 3
It’s only fitting that I announce my 2nd book (along with 7 other authors) on my 14 year anniversary with MS.

This is a book that I would have loved to read early on in my journey.
It’s about how we moved through our diagnosis and came out the other side for the better.

““Resilience Redefined” is not just a collection of stories; it is a call to action. The authors challenge those living with an autoimmune disease to not only survive but to thrive”

So… drumroll please…
Pre orders are officially open!!

If you pre order your copy through me before October 24th you’ll also get:
• Signed copy of Resilience Redefined
• The MS Handbook E-book
• Resilience Bookmark
• LissMS Sticker Pack (first 10 pre orders)

Grab your copy here: https://liss-ms.com/product/resilience-redefined-thriving-with-autoimmune-disease/ 

Or comment “book” below and I’ll send you the link!!

It’s only fitting that I announce my 2nd book (along with 7 other authors) on my 14 year anniversary with MS.

This is a book that I would have loved to read early on in my journey.
It’s about how we moved through our diagnosis and came out the other side for the better.

““Resilience Redefined” is not just a collection of stories; it is a call to action. The authors challenge those living with an autoimmune disease to not only survive but to thrive”

So… drumroll please…
Pre orders are officially open!!

If you pre order your copy through me before October 24th you’ll also get:
• Signed copy of Resilience Redefined
• The MS Handbook E-book
• Resilience Bookmark
• LissMS Sticker Pack (first 10 pre orders)

Grab your copy here: https://liss-ms.com/product/resilience-redefined-thriving-with-autoimmune-disease/

Or comment “book” below and I’ll send you the link!!
...

33 15
If you like being outside, check out the America the Beautiful Access Pass!

This is a pass for those with disabilities to get into National Parks, Monuments and more for FREE!!

You can get it online or at the entrance of a national park!

Share with anyone who also might like this!!

If you like being outside, check out the America the Beautiful Access Pass!

This is a pass for those with disabilities to get into National Parks, Monuments and more for FREE!!

You can get it online or at the entrance of a national park!

Share with anyone who also might like this!!
...

32 2
This is obvs one option of many on how to help yourself through these moments.

But when you’re stuck in negative worrying, don’t forget there can be a positive outcome too!

This is rewiring your brain in action.

You notice you’re doing something you always did,
Then do something different.

And boom! A new pathway is born.

It needs some love and attention to grow,
so keep practicing!

This is obvs one option of many on how to help yourself through these moments.

But when you’re stuck in negative worrying, don’t forget there can be a positive outcome too!

This is rewiring your brain in action.

You notice you’re doing something you always did,
Then do something different.

And boom! A new pathway is born.

It needs some love and attention to grow,
so keep practicing!
...

22 0
This isn’t a you problem, it’s your brain acting as it should.

Are you going through some change and upheaval right now too?

I see you.

Comment any questions on how to deal below and I’ll make a part 2!

This isn’t a you problem, it’s your brain acting as it should.

Are you going through some change and upheaval right now too?

I see you.

Comment any questions on how to deal below and I’ll make a part 2!
...

38 2
We have a new space for my (free) LissMS Healing Community!!

Come on in…

Let me show you around!

This is a space created by an MSer (me), for other MSers (you) to be able to come together and support each other, learn new tools to help manage MS and maybe find a few new internet friends!

Wanna join us?

Comment “community” below and I’ll send you the link!!

We have a new space for my (free) LissMS Healing Community!!

Come on in…

Let me show you around!

This is a space created by an MSer (me), for other MSers (you) to be able to come together and support each other, learn new tools to help manage MS and maybe find a few new internet friends!

Wanna join us?

Comment “community” below and I’ll send you the link!!
...

16 1
There’s so much buzz about everything needing to feel good if it’s right for you.

Sure, there’s a time and a place for alignment.

But, growth often happens in the uncomfortable moments.

Just a reminder.
Keep going.
❤️

There’s so much buzz about everything needing to feel good if it’s right for you.

Sure, there’s a time and a place for alignment.

But, growth often happens in the uncomfortable moments.

Just a reminder.
Keep going.
❤️
...

32 9

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