Goodbye 2018

Yeah, 2018 wasn’t great. It wasn’t horrible though. I didn’t decline rapidly or anything. No, it’s more like a slow gradual descent. Which is why I’m making the decision to switch to Ocrevus. I’ve stated before how wonderful Tysabri has worked for me. Up until I switched to the every-two-months dosing schedule and how the last two weeks are a horrible existence. After doing research and seeing how people are doing on Ocrevus, and my JCV titre, it’s a no brainer. The only real issue is the washout period. I believe it will end on the 10th of February. My next Tysabri infusion was supposed to be on the 10th of January, but I’ll be canceling that on the second of January. Right after I make the decision known to my neurologist, the great Dr. K.

So here is to a wonderful 2019! And hopefully a medicine that completely puts the brakes on this horrible disease.

You Know What’s Awesome

When your wife is a skilled MR tech that finds your MS before you realize you have it, operates the scanner that tracks the progress of the disease, and finds new lesions that radiologists miss.

-Thank you Shelby!

For Every Down

There is an up

My wife dropped off my recent scans with the great Dr. K, to verify that the lesion I’ve pointed out is indeed a new lesion – indicating disease activity : (
She also picked up my physican’s certification form. I should have it mailed off in a couple days (after I get the passport photo), and it’ll be about a month until I am legal. Woohoo.

Not Good

: (

That lesion I thought was new, well it was confirmed as a new lesion. I thought I was feeling some symptoms, and it turns out I was likely that which I felt.  What a drag. How depressing. Just when you think you’re going to make it a decade without a relapse. Just when you think you’re in the clear.

NOPE!

Bummer spot!

EDIT: Helps if I upload the right image

Followed-up

With Dr. K today.

No joy. Still stuck in that is the Tysabri working for me on the extended schedule? Maybe. I’ve got to get him old scans to compare to the new scans, drop them off at his office so that he can compare them. And we’ll go from there.

Once he determines if it’s a new lesion that was pointed out, we’ll decide whether or not to continue the Tysabri at a shorter dosing intervals (e.g. every 6 as opposed to 8 weeks), or should I switch to Ocrevus.

As I’ve stated before I’m not too keen on switching off Tysabri, as it has worked so well for me. However, my PML status kinda puts a kink in that drug.

So If needed, I will switch off, but only if it can’t be avoided.

I’m pretty much stuck on tysabri as coming off it can induce what is known as a rebound relapse. Supposed to be pretty rough. I’d rather avoid it if I can.

So where am I now. More waiting and seeing.

An aside, when my wife was talking to me about the doctor’s report, she mentioned that the doctor reported my lesions were innumerable. Basically too many to count. My brain is swiss cheese, yo. Not good. Then she mentioned a patient who had a couple of lesions that is stuck in the fetal position. Wow, that sucks. big time. I guess the lesions are just missing their target or my brain has a lot of redundancy. Or something else, the brain is certainly mysterious.

Now I’m off to research ocrevus more. And I’ll try to complete the green card application. And crack my knee.

Ups and Downs of MS

Its a roller coaster.

Yearly MR

This is unofficial at this point But I believeĀ  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.

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. KĀ  must sign.