Neuro Update The boring version ;)

Hello Family & Friends,
I had my follow up neuro appt today. The good news: I have NOT advanced from Relapsing/Remitting MS to Secondary Progressive MS, which was a concern of mine. That is good.

My MRI results are as follows: Brain: 2 Lesions (no change), Thoracic Spine: No lesions. & Lumbar Spine: No lesions. Neuro "On paper, you look good. In person, by clinical examination, you look terrible."

VEP (Vision Evoked Potentila) Exam: My left eye came back looking as if I have Optic Neuritis, or an "MS Eye". I am being sent to an Optho-Neurologist.

I am getting 3 weeks of Physical Therapy again through the month of April. I also, see the Pain Management Specialist in April.

They did see I have 3 "bulging discs" in my neck & are concerned it may be causing the tension in my neck and the headaches. She claims they are not a real cause for concern & don't require meds or surgery. Also, there are 2 "herniated discs" in my lumbar spine. If serious they could lead to weakness, but she said mine are not constricted enough to be causing mine. She believes it's the MS.

She gave me 2 different kinds of pain patches to try for areas of bad pain. If I like either she will write a prescription.

She suggested I switch injections from Betaseron to Copaxone. The differences go from injecting every other day to everyday. Also, the new one doesn't cause flu-like symptoms, but has more on site reactions. She would like me to switch. She said, "But another neuro could look at your MRIs & say leave her alone, she's fine." She continued with "I am concerned that you are not only bad, but worse this time." She said the choice is mine to switch and there are no guarantees I will do any better. I have had no new lesions since being on Betaseron & in fact, have 2 less now. My concern with switching is if this doesn't work I graduate to hard hitting drugs with side effects like Cancer & Brain Disease. I asked when I need to decide. She said I can take all the time I need.

I decided to wait a month. I am going back after the physical therapy. I want to see if anything else makes a difference before I make a big change like this.

So, I think that is everything. All PT & Appts are in April and conclude on Good Friday. More news after that.

Love, Tammy

MS Story (A Poem)

MS Story (A Poem)

One Night, before bed
There was double-vision in my eye.
It was a little blurry,
But just enough to ask, why?

When I woke the next day,
The blurriness was gone.
I felt my concerns
Were basically wrong.

Then a few weeks later,
I lost my grip.
I dropped my glass
And started to trip.

I thought, “How clumsy of me,
To drop that glass,
To lose my balance
And land on my ass.”

But I shrugged it off
As if I had a bad day.
Pushed it from my mind
And went on my way.

Then one morning,
My legs felt weak.
My hands had tingles
And I stuttered to speak.

That’s when all the weeks
Of excuses came rushing back.
Each moment crystal clear,
As if I had kept track.


Something was wrong.
I knew it in my heart.
That this meant something,
It all played a part.

I was weak and I stumbled,
Exhausted and confused.
My body was trying to tell me,
Inside it was being abused.

Alarm, fear & panic,
Lead to the hospital’s ER.
Which lead to a neuro,
Where the tests would start.

Words & possibilities
All thrown about,
Like Lyme disease & Lupus
So many seeds of doubt.

In the end came the news,
Multiple Sclerosis is the name.
From now on my life
Will never be the same.

I buried myself in books
And internet links.
Different vitamins & shots,
New pills & veins with kinks.

I was overwhelmed with info,
Not sure where to turn.
Friends & family staying close,
But there was so much to learn.

Inside my head was swimming.
What does this all mean?
How much will my life change?
Is it as bad as it seems?

I made tough decisions
And chose my own way.
Some friends disagreed
And wanted to have their say.

Some friends stopped calling,
They weren’t on my side.
MS was too scary for them.
It was easier to hide.

But I cannot hide,
MS is always there.
I have to face it,
No matter how scared.

Each day I wake up,
MS is still there.
Physically & mentally,
Life seems so unfair.

I cried & I mourned
For my life & past dreams.
I found my future changing
So much I wanted to scream.

Then one day I woke up,
And decided I needed to change.
To find a better attitude
In my new body so strange.

I found a way to face it.
To live my life with less regret,
To get a better perspective,
My life is not over yet.

I dreamed of a new future.
Found a way for my heart to mend.
Started living my life on my terms,
Because this is not the end.

~Tammy Malkowski 3/12/2011

You Be My Friend & I'll Be Yours (A Poem)

Be My Friend & I’ll Be Yours (A Poem)

MS is inside my body
And a little of my heart,
But it isn’t all of me,
It is a small part.

There are definitely days
It seems so huge
That it can consume me
And make me it’s stooge.

I will rise above all it does
And show you my heart
That I am still the same
And the most important part.

Of course I need
Friends & Family to understand
To stand beside me
And to hold my hand.

Just don’t forget the strengths
I have that you knew before
Don’t label me only with MS
And shove the rest of me out the door.

I can still laugh and smile
And care about you
I am still your friend
And love to share what you do.

I still love to shop and hang out
As well as gossip & confide
I still love to giggle & laugh
And stand by your side.

I have my sense of humor,
My smarts and my doubts
I have my intellect
And the crazy advice I spout.

Remember I have MS
So I know you understand
But forget when I want to be me
And enjoy all our plans.

MS is a struggle each day,
But that’s just one thing.
I struggle to never lose
Myself & why I wear his ring.

We choose our spouse, our friends,
And partners for life;
Our Family is who God sent
To support us in times of strife.

Never knowing who’ll stay or go
When fear or judgment gets in the way.
Sometimes friends become family
And true blood fades away.

For the ones who stay
A part of our lives.
You choose us, but we choose too
And help relationships survive.

Keep me close in your heart
And close by your side
We are joined in trust
So together let’s enjoy the ride.

~Tammy Malkowski (3/5/2011)

Dear MS... (A Poem)

Dear MS,

Today, Ms stay hidden
I am with someone I love
Today, I want to forget you
And give you to the Lord above.

I need to take a break
Some time to forget
Tomorrow you’ll come back
And remind of your threat

To steal some moments
To steal some time
But today you’re on vacation
Today my body is mine.

I will smile, I will laugh
I will be who I am inside.
I will cherish each moment
So MS, go to Hell & hide!
~Tammy Malkowski (3/5/2011)

Your Own Show (a poem)

Your Own Show

Be more than your MS
Take charge of your life
This is no easy task
But you can rise above this strife.

Pick your battles, make your mark
But don’t be a slave to plans.
Choose to live, laugh & love
Show MS where you stand.

Show your smile, your grace
Your strength, your wit.
Your smarts, your charms
Your fighting spirit.

Stand straight, stand tall
Make your insides glow.
Be the one to prove you are,
The one who controls your show.

You know in your heart
That your body can feel strange
But it is up to us all
To show inside we didn’t change!

~Tammy Malkowski 3/5/2011