Tuesday, March 23, 2010

Why it is important to follow protocol

From Tuesday, March 23rd (Accidently saved as a draft)-
Today, I sit in the dark with my sunglasses on, trying to get through the day with a raging migraine. It is completely my fault because I didn't follow protocol for my IVIG. Things had been going so well that I didn't take each dose of benedryl, and while I took the tylenol during the treatment I didn't continue for 24 hours, then the real naughty part...I did not adequetly hydrate. All of the above resulted in a mild allergic reaction on Saturday night, itching, swelling, fun, fun, fun...and then a headache Sunday and Monday followed by a Migraine today. It is one of those migraines that feels like there is a bear trap, a rusty one, clamped down on your brain just twisting and pulsing. I am trying to hydrate but being so far behind the 8 ball has done me zero favors.

I am also having increased difficulty breathing. This hasn't happened in awhile and is totally freaking me out - I do NOT want to go to hotel Spectrum Hospital for another extended stay. I had a Pulmonary Function Test at my new pulmonologist and hopefully the test just fatigued me and this will pass...we'll see. My MVV (maximum voluntary ventilation) numbers came up 20 points but are still 40 points below where they should be. This was the first thing back at the end of the summer that clued the specialists into the fact that my disease was neuromuscular in origin. I am happy that the number is up but the pulmonologist said we really need to get it higher. My Maximum inspiratory and expiratory pressures each went down 5 and 6 points respectively. This is the measure of diaphragm strength so this is extra discouraging. My pulmo is going to consult with my neuro to see the best way to strengthen my diaphragm without causing further weakness. The problem with myasthenia is that the area being attacked can actually get worse with physical therapy if you do too much. It is like shining a flash light on it. If my body things my neuromuscular transmission is a virus, then the muscles being worked get attacked. Oy! You can win for trying. I am going to rest and try to get stronger.


  1. IVIG gave me a horrible migraine when I tried it. I couldn't even sit up. Laid in bed, in the dark silence. Even threw up. Had a fever, felt like I got run over by a bus...horrible!!!

    Have you ever had or tried plasmapheresis? NO side effects. Just curious.
    Do you have a neuro in Grand Rapids, too? Who is your pulmonologist?
    Thoughts and prayers your way!!

  2. The IVIG has worked really well for me when I remember to hydrate and take my pre-meds. I don't really want to start plasmapheresis due to the fact that I am spoiled getting my treatment in my house. Dr. Teener is my main neuro, he calls all the shots at least for the first 2 years of this illness since I have had such a strange presentation. Blodgett has been great about following his orders though. Butterworth likes to question everything and one up out of area docs which put me at a very vulnerable point in December and I got way sicker. I just got a new pulmo here in town and I really like him. He too, wants Dr. Teener to call the shots but will assess and treat me for any diaphragm issues.