Do NOT get MS. and dont hop on any drug bandwagns. I often wonder where id be if i just let it ride. probably bettter off than where im at now. It wasnt nown then, but the drug I was taking, Tysabri, has a REBOUND EFFECT. like life alterinng. life was good. Drugs were working. Little to no disease activity was going on. nothing seemed out of the blue. I was feeling good. it seemed to good to true. I was riiding my bke over 2,000 miles a year. I was losing weight. All was right with the world.
Until Valentines day of last year (2019). It all came crashing down. Hard. Spent nearly a month in the hospital. a few of them. NCH, rush, and Norhwestern (in the city). As it turns out, my immune system was wreaking havok on my Brain. Or destroying it. I have pictures.
The attack was horrible. It has left my mind in shambles. I’ve been trying to make Shelby proud. but I just dont seem to be able to come back from this horrible place in which I’ve ended up. HELP ME – I AM IN HELL.
More to come soon. I’ve got to check on this bloog more.
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.
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.
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.
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.