Hopefully twitter will work
Ups and Downs of MS
Its a roller coaster.
This is unofficial at this point But I believe I’ve had MS activity. I wont be able to confirm it, semi-officially, until sometime tomorrow. The official word will come down on Monday.
That realization, correct or not, has brought a monumental weight of bricks down on my shoulders.
Its the anxiety that gets ya.
MR Day
Today is the one time per year I have to get an MR(I). Yeah. At least there is no needle. Dr. ordered it without contrast. I’ve mentioned before I loathe needles.
Although in this case I might’ve actually needed contrast. With those issues I had a little while back I’m nervous I had new disease activity. But alas, I’m mostly managing my disease myself (with the guidance of a ms-specializing neurologist, of course) and it is going so well. I’m very nervous that I may have had new activity thought. I will know tonight – unofficially, at least. Best of luck…to myself.
My nerves are really on edge already. The prospect of further disease activity is wracking. I count so heavily on the Tysabri stopping my MS. I certainly hope it is continuing to work so well and those issues on my right side were nothing but past disease activity resurfacing, although I’ve never had any issues with my right side….The pressure is what is going to get me before the MS even has a chance to take me out.
Holy Neat
Through the miracle of time, I was able to wait out the sharing issue I was having with my sites posting to bookface.
Says it is working now. I’ve yet to test it, but its much futher than I’ve gotten on the 4.x branch of this site.
Woohoo!
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.
Neat-o! Impending doom!
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!
Food. Yummy food. Even hospital food is good when you’ve got a Tysabri drip going.
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.
Mike’s Bikes
I too have discovered bicycling to combat my MS.
Except I don’t cycle. I ride my mountain bike.
Yes, there is a difference. If you don’t realize it, you don’t ride a mtn bike or are part of the problem.
Elitest cyclers.
Soul Not Sold
I haven’t sold my soul to the public, other than this site…that’s probably why there wasn’t an outpouring of support from the dumb and ignorant populace when I disclosed. Nobody cared. Life as usual.
But if you’ve sold your soul to the public and disclose that you have MS, you get an outpouring of emotional support from people that don’t even know you.
Take the most recent example: Selma Blair
No? You must be as out-of-popular-touch as me.
How about Montel Williams?Jaimie Lynn Sieglar? Jack Osborne?
So what do you have to do to be reached emotionally in this country? Sell your soul to the public?
Nope, not gonna happen. I’m doing just fine dealing with this on my own. I do not need the public’s support.
The public eye sucks, and all that watch are hypocrites anyway. I don’t need their hollow sympathy.