Infusion went very well

I arrived at the Palmetto Infusion Services Center a little earlier than my appointment time but they took me right in.  I sat on one their oversized recliners and waited for things to happen.  Because I was new, I had to sign and read quite a few documents as well as having a new nurse in the unit doing the prep work.  Christine wasn't new as a new graduate, she was new to the Infusion center.  She had many years as a nurse and in doing infusions.  She served in the Military and had many years doing the same thing, starting IV's and taking care of personnel.

When it was time to find that all elusive vein, I told her not to go for the hand but the wrist.  Nope, she would not listen to me because she said she had been dealing with many patients and said they always want a certain area all the time for infusions and she new best.  Guess what?  She wasn't successful and had to get a vein in my wrist like I had told her.  Of course she had a reason why it didn't work.  It just left me with an ugly bruise on top of my hand.

I have not had any side effects so far (knock on wood) and I hope that stays true.  I haven't seen any changes in my ability to get around but I don't expect to because this is not a drug to reverse anything, it is a drug to slow down the progression.  Progression will still happen but only at a slower speed.  At least this is what the information said.

Palmetto Infusion Services also have doctors on staff.  I feel better knowing this for that "just in case" feeling.

I really feel pretty well.  I still have my moments but I know how to deal with them.  I get frustrated when I have to decline going anywhere because of my MS at times.  I want to have that normal feeling again.  To be able to have fun without checking myself that I am not over doing and causing more of an issue for me.  Taking a long trip or a long day of shopping without some sitting will usually cause me to need a day to recoup.  The long drive will stiffen up my legs so when I start to walk, it takes a while to get those old legs moving.  I am just not able to go, go, go.  Ah, the trials of MS.  I just have to laugh and continue on.  What else can I do?

Today was the day

I finally had my infusion of Tysabri (tie SA bree) today.  I was a little apprehensive but I usually am when it comes to something new.  I can do research all I want, know how any procedure will go, but actually having something done is scary.  I just want this drug to work for me.  If I can't tolerate it, I do not have many other options to go too.  I am going to take it one day at a time and hope it all goes well.

Tysabri is a powerful drug to help slow down the progression of disability.  It is not a cure.  This drug comes with several side effects as most drugs do but there are a couple of serious ones.

Tysabri may increase my risk of getting an infection of the brain or the covering of my brain and spinal cord caused by herpes viruses that may lead to death or severe disability.  This is called Progressive Multifocal Leukoencephalopathy (PML).  The chance of getting  PML increases if I have been exposed to the John Cunningham Virus (JCV).   Typically, people with JCV are exposed to it during childhood and is harmless but it can cause PML.  A blood test was done to determine if  I was carring the antibodies to JCV.  I tested NEGATIVE, which lowers my risk compared to someone who is positive but there is still a chance of getting PML, which is something the doctors have to say to cover themselves.  Getting PML is very rare.  This drug has been on the market for several years now.

Tysabri could cause liver damage and it will lower my immune system.

Now, I am sure this all sounds very scary.  I was scared about this drug when it first came on the market and said "No Way was I ever going to use this drug". I guess I had a change of opinion because now I have gotten a little worse and I want things to slow down.  This drug is not like a steroid.  When I had the infusion of steroids, it was to stop a relapse.  I do not have relapses but continue with the same symptoms but they can progress.  I will never go back to what I once was.  I deal with that on a daily basis.  Actually, we both deal with this every day.

If anyone have questions or concerns, talk with me.  You can go to www.tysabri.com for further information or just put in Tysabri and it will pull up a lot of web sites to go too.

Here's to a better week

I do have my appointment now for the Tysabri infusion for this Thursday, January 15.  I had to get my doctor's OK to start this drug as Palmetto Infusion Services. the company setting this up for me, did not want to consent to the new drug infusion without having the doctor give his blessing.

I don't fault them for being cautious because many people are "Let's Sue" happy.  I was just frustrated that I had to go through another hoop to get this done.

I have also wanted a new wheelchair and asked about getting a new one back in July 2014.  It is now January 2015 and it is still trying to get through the insurance maze.  I only have until January 24 before I would need to go for another evaluation and start this process all over again.  I am hoping for some good news in a few days.

Of course, I am being told by my better half that I don't need a wheelchair now.  I am doing better because I have used my bike.  I have only used it maybe 3 times so far.  When I get off, I am not as steady as someone should be without any difficulties.  I enjoy the bike and Frankie enjoys riding in the basket on the front.  He doesn't do this until he has walked pretty much the whole route and hopefully done his business.  It amazes me how much faster he walks when he is following the bike.

My days can be either good or bad or even somewhere in between.  I don't walk straight but I still walk.  I can't go for long walks but I do a little.  My memory (short term) is really bad.  Don't rattle off a bunch of things to me and expect me to remember everything.  I usually will have to ask you again and again what was said.

These are just frustrations I deal with daily.  I try to make my day as normal as possible.  There are days when my legs will show me that this day is not going to be a good one and I have to change my plans.  I also have the problem of pushing myself to far too.  I also pay that price too with exhaustion and problems with movement.

I don't know if Tysabri will help me.  I am going to give it a shot, though, in hopes it will stabilize things for me.  It won't cure me but with the hope it will just slow progression down.  I am not in a wheelchair now and I am still able to get around.  This I am very grateful.

I thank everyone who has given me suggestions to help with this disease.  I take all the information and really do further research.  Do I expect a cure soon?  No I don't.  That is OK because I will just keep going the best I can each day.  I try to laugh as much as possible and to not get too stressed (easier sometimes than other times).  If someone wants to talk about this, I do not have a problem talking about my MS.  I know there are fears of the unknown.  I have had many myself.  Knowledge and being able to communicate what you are feeling and thinking, is the best way that I have found to get through the day.
 

Part II Of this a Week

I checked with the fusion center and I have to reschedule my Infusion.  Because I am on an antibiotic from the oral surgery, I can't be put on the Tysabri yet because  it lowers my immune system, which is not a good thing when trying to fight any infections.  Maybe the end of next week I will have this infusion. It is just so frustrating after waiting so long to get this process to this end. I started this whole thing the beginning of December.  I was happy to finally have a date now I wait again. I have handled it this long so what's another week.

We are having a couple of pieces of wood floor fixed this evening and Frankie and I are hanging out in the second bedroom away from all the noise.  This repair was unexpected but appreciated by the builder.  The builder could have said No because we are out of the warranty period.  Maybe having the wood floors has a different time limit.  Whatever the reason, we are glad it is being done.

This will be A week...

It is a little cool this morning but not like others have been dealing with lately.  We are expected to get that Artic blast here by Wednesday night and wake up Thursday morning to very cold temperatures with a high of about 39 degrees.  Brrrrrrrr

This morning/late afternoon I saw an Oral Surgeon to have two implants put into my mouth.  (I know obviously...).  

The surgeon said it shouldn't take long to do and I will be sedated, thank goodness but awake. No pain until the very end when the numbness was starting to wear off.  I did my research and checked it all out on the Internet beforehand so I kinda knew what was going to be done.  Maybe too much information.  It went very well.  I am so, so, so glad I went this way and not by a regular dentist.

On Thursday, I will be going into Port Royal (Beaufort) to have my first infusion of Tysabri.  This is a very powerful drug for MS to help slow down progression.  I had a visit with my nuerologist last month and I was told I was starting to decline and he wanted to stop things.  So, I will start having this infusion, that will take an hour and then I need to wait another hour to make I don't have any major side effects, every 28 days.  My biggest complaint is with my legs and balance.  Memory issues are present and was shown on the MRI films, so when I ask for you to repeat something just said, I do so because of this problem and not because you might think I didn't pay attention.  I have had some brain atrophy which means I no have some of the grey matter around the inside of the skull.

We changed our living room layout again.  We removed one of those green chairs by the slider and it really makes the room feel larger and more open.  We will keep it this way for awhile and may get another chair that is narrower than what we hand.  You will never know what will happen next...