THE INVISIBLE OBJECT: THE BACLOFEN PUMP

The invisible object: The baclofen pump.

My Baclofen pump.

Can't see it?

That's right. It'can not be seen.

What you see is the scar from the operation, and a bit of my. Supra catheter…

 But that is A story for another post.

The photos and scary stories that I read on the Internet kept me afraid for months before 

I decided to go forward with having a baclofen pump placed. With the spasticity the way it was, I had no other choice, than tp get one, really..  My only regret not having this operation sooner… Much sooner!  While I could still walk.

I had the pump placed in March 2015.  The modern age of 2015, where my doctor had already done  hundreds of these operations.

Refills of the pump a piece of cake. The nurse uses lidocaine to numb the area first, before refilling.

PS.… one thing that scared me for all those months was the idea that the pump was placed under the skin. In actuality, it is placed under the fat layer! this object will not pop out "pop out" like I was afraid might happen.

Thank you, Tysabri.

Tysabri.

All I got from Tysabri is this blue fleece throw blanket. 

 I received this in the mail after I signed up to take Tysabri.

But when I was there in the infusion room, I had forgotten to request that I lay down fully: 

I had something called  Vaso-vagal, where my blood pressure would drop and I would pass out (and have a little seizure even) upon any kind of needle play.

But it wasn't the needle I was afraid of this time. It was Tysabri and the possibility of PML.

It turned out that the IV was not yet connected to a bag of Tysabri, anyway. After that little episode, the nurse and a phone call to my neuro, it was decided to abort mission.

I wonder now, for the first time, if I had taken the drug… I might still be walking today.

In any case, I have this blue fleece throw blanket and I use it on a daily basis.

THE EXPANDED DISABILITY STATUS SCALE EDSS)

Kurtzke Expanded Disability Status Scale (EDSS)

I just found out my score on the expanded disability status scale.  I am looking at clinical trials for stem cell on clinicaltrials.gov... Some of these trials, you need to still be walking and rate at the highest, a 6.5 on the scale.

I am 8.0 for EDSS.

The plastic bucket and chain.

So, today a Hoyer lift is being delivered to my home.  It is getting more difficult for my husband, my caregiver, to transfer me because of his back. And so begins a new era of my life with progressive multiple sclerosis.
 A commode was delivered a few weeks ago:
the set will now be complete.
And so this will be my life now, going to the bathroom in a plastic bucket, all because the toilet is not accessible to the Hoyer lift.

For my first post, I will try not to delve into history, but only go forward.

I learned of a treatment for secondary progressive multiple sclerosis on the www.thisisms.com bulletin board.
The treatment is a high dose of vitamin B7, "MD1003", BIOTIN.  I am hoping that my neurologist will prescribe this to me.  It could take nine months before any effect is felt.

This same neurologist sort of reluctantly prescribed LDN to me upon my asking for it.  It wasn't long before I discontinued LDN because it was causing an increase iof spasticity and painful spasms. Then, I learn that LDN stimulates the immune system.

I will be asking for biotin, asking what he knows about stem cell transplants, and what he thinks about the 15 year rule. I have come across the idea that, RRMS goes into secondary progressive MS at 15 years, regardless of treatment.