Sunday, October 19, 2008

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.

5 comments:

Joanna said...

I'm sure you want to keep this a family friendly blog so I won't give my opinion of shots and all that rot.

I did not know there were certain things you couldn't take. I hope you feel better soon! So does this mean you're flu safe for the winter or don't know?

Okay, I have to know - what flavor popsicles? :)

Kerri said...

Green, purple, red and orange. I used to eat one at a time. Now I always have two. I can't decide on my favorite, so I just eat em all.

Yah, I'll supposedly be covered from the flu this year, but I'm still not gonna be runnin' noses with any sickies, ya know??

Oh, I do have to say that my FAVORITE popsicles of ALL are the red white an blue one. Yummm....

Leigh said...

I'm glad you're seeing a light at the end of the tunnel! Hopefully it will prove to have been worth it all.

I lived on Welch's fruit juice popsicles when I was pregnant with Andrew but I haven't seen them in years. They were awesome!

Have a great day!

Randy Renner said...

I have M.G. an Lupus. .and im 25 with a 5 year old son actually sitting in the hospital right now getting my I.V.I.G treatment. .would love to talk to someone kinda like me ..I live in Alaska. .my name is randy rose..Please feel free to give me a call if u can 9073947241

Randy Renner said...

I have M.G. an Lupus. .and im 25 with a 5 year old son actually sitting in the hospital right now getting my I.V.I.G treatment. .would love to talk to someone kinda like me ..I live in Alaska. .my name is randy rose..Please feel free to give me a call if u can 9073947241