December 21, 2016

Scary brain stuff

Before Thanksgiving I had a Benlysta infusion that triggered many neurological and cognitive symptoms. It was scary and still is. My rheumatologist ordered a brain MRI which thankfully showed no structural abnormalities. I saw her yesterday and we're testing for CNS lupus. That involves ANA labs and neuropsych testing once insurance approves.

If there is CNS involvement, which seems likely at this point, I'll stop Benlysta and start something stronger. Like everything else in autoimmune disease, this involves a trade off: greater risk of infection and more side effects for less Brain Wrong (my highly scientific term).

I told my Sweetie what's going on, that was hard. I don't want him to see me primarily as a sick person or to worry. He's been very supportive. I haven't told him my theory that autoimmune disease attacking my brain makes me an auto-zombie, it feels too soon.

Ella snuggles have helped
I had a Benlysta infusion yesterday and if that kicks in I'll start feeling better tomorrow or Friday. If not, eh, I will muddle through.

Positives, because I like to end on an up note: 
  • I have a fantastic new rheumy
  • I still have friends despite being sick most of the last 3 months
  • Sweetie--I can't believe my luck
  • My mom, who's been great.
  • Internet knitting friends :)


  1. Hi! When they did the MRI, did they rule out PML (progressive multi focal leukoencephalapathy?) I only ask because I was taking a trial drug that had PML as a potential issue. I had to carry a wallet card about it; my husband and I joked that it was the 'in case of zombieism' card.

    I don't mean to freak you out at all. It's just when I hear 'treatment for autoimmune disorder' and 'feel like a zombie', my mind leaps.

    1. Thank you for thinking of me. The MRI was fabulously boringly normal, no plaques or lesions that would indicate something like PML or MS. A neuropsych exam should narrow down what, if anything, is going on based on my cognitive deficits and fatigue.

      My primary feeling is that of being drugged. Any craving for brains is hiding, even from me ;)

  2. I have cognitive deficits from fibro, so I'm feeling you. Also sending good thoughts your way that it will lift. Hooray for a normal brain Mari, too!

  3. found your blog to day, we have knitting in common.( the same hobby) Hope your health is better and my advice ( as a catlover)please take another cat for helping in bad days. It helps very good. The animal shelters are full of lonely cats. I hope you soon feelbe much better!mieke


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