MG, the Snowflake Disease

Hey everyone.

They call MG the snowflake disease, because while snowflakes all have many things in common, each one is distinctively unique. (They should call in the pain-in-the-rump-one-minute-you're-fine-the-next-you're-on-the-floor-because -your-legs-gave-out disease, but I guess that would take too long.)

Anywho. There are many, many things that myasthenics CAN'T take: like magnesium. Almost across the board, it makes all the MG symptoms worse. There are also many, many things that SOME myasthenics have no problem with, while others may go into crisis. For example, most people with MG cannot take the antibiotic Cipro. I, on the other hand, can take it with no problem. MOST myasthenics love Levaquin, a fairly new antibiotic. I took it for three days and almost ended up in the hospital. Doug had to half carry me down the hall, and push me up into my hospital bed (this was when the hospital bed was next to our bed in the bedroom. We could then fall asleep holding hands, even though we couldn't sleep in the same bed yet. : )

One of these questionable things is the flu shot. My very first GOOD neurologist (yes, I must distiguish because I had several that were HORRIBLE before him, but that's another post) told me to never get a flu shot. I should have left well enough alone. EVERYONE kept asking me about the darn flu shot so I thought I'd ask my current neurologist. He is fantastic, knowledgable, and the head of the neuromuscular clinic at the University of Michigan. Although I am partial to my first good neurologist, Dr. Moretti, Dr. Teener comes in a very close second. So I ask, and he says the benefits are sure to outweigh the consequences....I would do it if I were you.

Let's just say he's slipped a little on my "Favorite Doc" list.

I have spent the last 4 days feeling like I was in a vise grip. My whole body. Not just pain, but pressure. The joints in my pinkie toe hurt. I didn't even know I HAD joints in the crooked little booger. If I took a deep breath, I felt like an elephant was sitting on my chest and my lungs were full of razor blades. I had a slight fever. I had a headache that was ALMOST a migraine. I was SO weak. Scary weak. The only thing I really wanted to eat was popsicles. (God bless my husband for taking Jacob to the store, on his own, while I slept.) I took 2 naps a day. For those of you know know me well, I can't sleep during the day. I have to pee every 10 seconds. I didn't get all snotty and sneezy, but I was achy and coughy, and of course, razor-bladey. (Dopey and Grumpy probably applied too!)

It's now Sunday, 5PM, and I only had to take one nap today! Wait...what is that? I hear soft strains of the Hallelujah chorus!! Most of my aches are gone, now I just have to not over-do it.

Anywho. Next time someone asks me if I want a flu shot, I hope they are wearing protective gear.