On Tysabri, Feeling "fencey"Feeling Fence-y:
I have had 7 doses of Tysabri, now. Two months ago, I started aspirating liquid when I tried to drink. After a few experiences, within a few days, of violently and abruptly (and oh! so gracelessly) choking on my coffees-with-milk added, I developed a cough. And it lasted more than just the day, but through the week. And then the next week.
And it was a Productive cough, too.
And it kept going, and going. Then chest pains came. And skull-bursting pressure from the intensity of the coughing. Then coughing blood (I assumed from such an agitated throat).
Then it was time for (at the time) my 7th Tysabri infusion. The TOUCH-nurse called my neurologist, who said "go ahead with the infusion," and she independently told me that I should get it checked out.
But I'm forgetful, memory problems blahblahblah, AND I'm trying to keep up with a minimal courseload (used to be a full-credit, straight-A'student, now, you know, "hope nothing happens THIS term...").....
The day after my 7th infusion I woke up (of course with my old-pal, Coughy McHackington), but with a fever, chills, vomiting, and hi-ho, a hivey rash!
But it's flu season... and the dog needs a flea-dip- "but I SHOULD get this cough sorted..."
The flu subsided (as well as the MS relapse on it's dance-card) after two weeks, but my Annoying, phlegmy-compadre was loyal as ever.
*****Week of Calm, Week of Final Exams Ahhhh (cough) hhhhhhhh****
Then quietly, hives broke out again...And they formed a patch....And the patch, oh- it grew. Concentrically out from the crook of my arm towards my wrist and shoulder. Then, it skipped over my cramping upper-stomach, kissed up my neck from clavicle to chin and settled in the crook of my other arm, in the night as I slept waking only to surrender to coughing fits.
So, here I sit. Covered in hives with a productive cough, hungry but no appetite, scared to eat because I can't keep anything down, and wondering whether perhaps it's time to hang up my mighty Tysabri cape.
Cos yeah- the flu, he's slumming around. But this second round of illin' seems really abnormal and daunting. As well as four separate occasions today where dizziness and pre-seizure sensations start then dissipate. And while I'm epileptic, that ****'s under -Control.-
So this CAN'T be right.
And after all, in the six months I've been on it, my legs have gotten bad enough that they're putting me into a wheelchair, at the end of the month.
But I don't know, "Maybe it's mostly just in my head," like my Neuro's assistant is so fond of telling me.
And while I know it's not, it's comments like that from healthcare practitioners that make me feel guilty for "bothering them" with possible new symptoms.
...Then again, it IS flu season, and it IS an immuno-modulator.
megbat 31-35, F 0 Dec 16, 2012