Reply To: Droopy Face!

bny and Dawn Kevies mom: When I take a shower I get itchy all over – no mater the water temp, it seems to stimulate my nervous system and I start to “wake up” – it feels kind of like I am getting plugged in to an electric box and I am shorting out & blowing fuses all over my body the whole time I’m in:.Zap! Zing! Stab, throb electric shock and then… CRAMP!! then I become an itchy wreck. The itching comes from the inside out and the outside in and starts on my back (where the water first hits) and gradually spreads all over, even extending to places where the water barely hits. It seems to wake everything up and then my feet – then legs – start to cramp up. I have red streaks all over from my body from itching by the time my shower process is done. Two days ago I guess I itched so hard (I can’t feel a thing!) that I broke through the skin between the toes – ugg! Then the fun really begins – big toe goes up, the other toes go down; on the other foot, my toes curl up in a little ball. The calf muscles kick in…then my hands curl in to little balls with the thumbs tight inside. I also have SPS which causes a lot of cramping and seizing up so who knows what is causing which symptom….all I know is that it takes me quite a while to get all the wheels going in the morning, the swallowing to go in the right direction, the meds to kick in so I can get my sneakers on …and to finally be able to look up at the beautiful sky – see the daffodils – hear my kids voices “mom, we’re late!!” and remember why that zany, zappy morning routine is worth going through.

BNY: A year & a half ago – before IVIG, I felt like the right side of my face drooped; even now I still slur my words and drool, esp when I am tired. In 7/10 I was diagnosed with dysautonomia – heart palitations, swallowing/bladder, voice & breathing, drooling and slurring. Better now but all still there. All of last year I had a dr who had me go through a series of testing to rule out ALS, which I have been told by my current doctor, “you don’t have to worry about that right now.”
When I am overdue for an infusion there have been times when I have climbed in to the bath – after feeling the water up to my elbows ahead of time – I sit down and realized YIKES it’s burning, burning hot. By the time I can pull myself out, from my waist down and elbows down I am bright,bright red – redder than a bad sunburn. Guess we all know what that means: IVIG!

So very discouraged right now because of all the horrible side effects from the IV; I know I desperately need the IVIG medicine, just can’t handle the side effects. Last week another bout of aseptic meningitis. Can’t take migraine meds anymore because I just added Cymbalta for the nerve pain and you can’t take them both together.

Sorry this has been such a long, complaint tilled letter. Next time I promise to include funny stories with happy endings and to find 3 reasons for each day that passes between my postings (one for each of my boys). Perhaps that is a way we can help cheer me us all up!