Here is my Appt agenda

This is my list for my upcoming appointment so that I can easily retrieve it when needed.

1.) Address Numbness that occurred first in my lip on my left side and then later the numbness occurred in my right hand – scary as I’ve not had any (noticeable) activity on the right side of my body.

2.) Ask to be infused every 6 or 7 weeks. I think 8 is too long and allowing very slight progression. The last two weeks are usually rough. Discuss PML risks with Dr K when asking.

3.) Left side seems more affected than what was previously realized. feeling tightness all the way up my body, even up to neck/shoulder area on left side. Relief comes after Tysabri treatment.

X.) Green card – prepare application and bring the form which dr. K  must sign.

Infusion Complete

On Thursday, November 15th. And I am already feeling so much better. My most obvious MS pain, my spastic calf, is already rapidly abating. In fact that whole left side of my body, which tends to ‘tighten up’, is relaxing. How very nice! Even if the untightening process is anything but fun.

sweating the needle
Sweating the needle soon to arrive

 

I'm sure that flashlight has a hefty price tag!
finding veins with a sophisticated flashlight

Neat-o! Impending doom!

One stick only please!
Clearly the veinfinder works. ONE STICK!

Big thanks to the AIC nurse, Ivanna, for the single stick. With the skill of a guided missile she punctured my vein quickly. I ALWAYS appreciate a quick stick! THANK YOU!

 

It actually wasn't that bad.
And the reward: hospital lunch!

Food. Yummy food. Even hospital food is good when you’ve got a Tysabri drip going.

Around an inch
And it snowed!

Good thing the family truckster is 4WD (actually AWD)!

Bring On The Bac

Baclofen, that is.

I posted on Friday how I was feeling pretty good this Tysabri cycle.

That is until this weekend.

My leg – errr- calf is super tight and totally bothering me.

Sigh. It’s getting old. With absolutely no relief in sight, or even available to me. Except for manual muscle release – A BIG NO THANK YOU – at this point at least.

So it is waiting until Thursday for my Tysabri relief. It is hard to even think straight with the calf as spastic as it is,.

But, lets focus on the positive: My right hand numbness has mostly resolved. I’ll be getting my yearly MR soon and that’ll show what’s up with that. Hopefully nothing.

And back to the negative: I can’t get the knee right above to crack, which provides temporary relief from the calf. I just need it to crack for now!

C’mon Tysabri!

And it’s looking like I’ll be getting my green card in December!!! Finally after two years!

 

< 1 week until infusion

And I’m feeling much better this infusion period. I had to look on the calendar and to my surprise, my infusion is only six short days away. Wow, last cycle was horrible. I was feeling so run down and suffering from my MS symptoms that I just couldn’t wait to be infused with that sweet, sweet Tysabri. As I’ve mentioned so many times, shortly after the infusion I’ll start feeling better, but before I go on…

I need to apologize to the clerical staff at the AIC. I was clearly in need of my tysabri and my temper was very short. I was taking things the wrong way, and I got unnecessarily hostile (for me, no threats of violence occurred, I was just being a typical American on my last infusion – which is VERY BAD IN MY BOOK). For that I need to apologize. So I am. I am very sorry for the poor introduction I provided when I walked in during my infusion. I will do my best to keep my hostility to myself. And in all honesty, unless the MS takes a dive in the next six days, I believe you’ll get the normal cheery in public (even if, as per usual, I’m burning on the inside) Mike. I feel terrible for the hostility I provided during the last interaction, and I’ll be apologizing in person in six days.

So now that is out of the e-way, I can get back to the more pressing issue of how I can feel so different after each infusion. I believe it may be the ‘freshness’ of the Tysabri, or the person behind the scenes who is mixing (? reconstituting) the Tysabri.  Or something. Some infusions I’ll feel wonderful if not for the entire time, most of the post infusion time.

But last time, it didn’t feel as good as first. So perhaps it was the infusion before last? Shortly after my infusion I got a numb spot in my lip. Scary, yes, but no need for alarm – or I thought. As it went away I forgot about it. Then a couple weeks later, I got the ***** scared out of me. I thought I was having an attack or something, as my left hand started feeling as thought it was going numb. Seriously, one of my ‘issues’ I have from the MS is the numbness of my left hand (mostly in the fingertips, or at least that’s where i touch to test the numbness). All of my MS issues have been on the left side of my body thus far (right-brain issues). So when I had a problem on the right side of my body, I kind of freaked out. I sent a message to my Neuro via the patient portal. Of course, the doctor was not in, so I had to talk with one of the doctor’s partners or something (someone filling in for him that day, I suppose).  I did hear back from him on Monday, but thankfully the numbness started to ebb. It is mostly gone at this point, for which I am thankful.  Ill find out more when I get my MR and see him in December.

I’ve also been sitting on the doc’s recommendation to get a green card for a year-and-a-half, so I’m going to contact a dispensary and see if they can help with the application process. I always stall out on the application part.