Medical Update

It’s been 2 years.  Can hardly believe it.  And at the same time, it blows my mind to think about how many more years (if it’s God’s will) that I will continue with this.  I’m in another round of screening tests to make sure that this dermatomyositis isn’t doing bad, bad things to me (yet?).  Had my full torso CT last Monday, and found out it was clear a few days later.  Need to schedule an ultrasound.  Going soon to have the field of vision test.  Got another order for a extra test at my regular blood draw. 

2011 has been a rough year for me health-wise.  At least at the beginning.  Dermatomyositis is a disease that you have to treat really aggressively; it’s very important to get it under control and keep it under control.  And if you hit it very hard with aggressive treatments, it’s possible to put it into remission.  In the spirit of hitting my disease aggressively, I started an expensive infusion treatment called IV immunoglobulin on January 31.  It was supposed to be four days of sitting and receiving an IV infusion of this medication over 3-5 hours a day.  It actually was a very relaxing (after the stress of getting to the hospital and finding out what was going on) experience.  I got to sit and work on the computer and surf the internet and talk on the phone.  But during the evening of the second day of treatment, I started getting a headache that just got worse all evening.  At bedtime, I took my narcotic migraine medication because I thought I’d need it to reduce the pain so I could sleep.  In the middle of the night (even on narcotic pain meds) I woke up in agony; Dan brought me more of the medicine.  By morning, Dan spent some hours trying to contact my doctors to get direction about what to do and eventually took me to the ER. 

A spinal tap confirmed meningitis.  This is a known, but rare, reaction to IVIG.  I spent the next few days in the hospital on pain meds.  Fortunately, IVIG causes aseptic meningitis, meaning there is no actual infection like normal meningitis (which can be bacterial or viral).  But there’s no way to actually prove you are not infectious, so I was in isolation (visitors had to wear masks).  The best way to tell is that aseptic meningitis only lasts 24-48 hours.  I went home suffering from a spinal headache, a result of the spinal tap, which kept me flat on my back for a week and a half. 

What happens if you have to step out of your life for 2 weeks? Chaos!  I got to watch a lot of tv, though.  More than I have watched in 15 years. 

The upshot is that I did get a benefit from the 2 days of IVIG that I completed.  My symptoms were almost gone for about 6 months even when I backed off a lot of the medications.  But overall, I wouldn’t go through meningitis again for anything, not even 6 months of good health.