Friday, 12 January 2018

Ocrevus update

It's been nine days of hell.  Nine days of feeling so bad I thought I was losing control of my entire body.

I have been completely incapacitated.

Dizziness, vertigo, nausea, headaches, a numb and tingly foot, sensitivity to light, sound and temperature. I haven't been able to leave the house (and only sometimes my bed) because my balance is so bad.  I am so dizzy I can't shower standing up.  I can't do much for my kids.

It's brought me to tears.

So today it was time to head to UBC hospital.

My neurologist has deduced that I've had an adverse reaction to this medication (it kills off the B-cells in my blood, and apparently that was too much for my body) and that it's brought on a pseudo-relapse (meaning all my previous MS relapse symptoms have all sprung forth all at once).

I am not going to do my second half-dose next week, as planned, as it could make things even worse for me.

But, last week's infusion still counts as a dose of the medication, and it is effective for 6 months.  So, for now, I don't need to worry about not being medicated or about which drug to try next (although I can still give this one another shot in 6 months if I decide to).

For now - a bunch of blood tests to rule out other not-so-obvious issues, and more rest.

This has been my toughest ever MS related reaction.  And it's funny - I feel like you learn a lot about life and friendship in the face of illness and disease.

And I really need to thank the people who stepped up, without being asked.  The people who helped me, without excuse, and without hesitation.  You don't need to physically come here to help (looking at you, 9-month-preggo, who had meals delivered from an online company), and you don't need to do anything grandiose.  You can leave something on the porch, or just give me a call.

Anyway, I'm alive.  And still (kinda) kickin'...




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