Hey All! Just Got Off The Phone With My Neuro And He Wants To Start Iv Ig Next Week As A Precaution.........you See I Went Down To 50 Mg. On The 11th And Felt Great For A Few Days, Then Started To Feel Unplugged, So I Upped My Mestinon, But Then My Eyes Started Giving Me Grief And My Pupils Became Really Small, Then I Started Having What I Call "wonky Eye" Where My Eye Wanders, So I Called Dr. Ibrahim, And He Said To Go Back Up To 60 Mg. For The Weekend, But If There Wasn't Any Improvement, To Go To Methodist Admitting For Another 5 Day Round Or Treatments...............i Know That He Is Just Being Cautious And And I Know They Will Make Me Feel Better, But I'm Terrified Of Needles! I'm Talking Really, Really, Afraid Of Needles. Plus, The Girl Who Did It Last Time Was Really Sweet, But Totally Screwed Up My Arm And Now I Have A Nasty Scar On It And Can Feel The Blood Flowing Through It Really Hard All The Time!!!!!! Augh! I'm So Upset! I Knew When I Had My Thymectomy That This Was Going To Happen, But When I Get Scared I Lose All Sense Of Reason And I'm Really Scared. For Those Of You Who Pray, Please Do So For Me - I Need It! I Need Peace! I Know A Lot Of You - Ok Most Of You - Are Sicker Than I Am, So I Feel Like A Big Baby Posting This, But I Don't Know Where Else To Go............

I'm sorry to hear that you aren't doing welll--you are still in my prayers. Sometimes if you tell them you are a hard stick and had problems last time they get you the most experienced nurse to do it...will you get a PICC line again...I've only had one once and it stayed sore the whole time it was in, but otherwise they like to change the IV site every 3 days (if it doesn't infiltrate sooner.)

You should ask your doctor to prescribe you so topical lidocaine...you can put that on 10 minutes before the stick and it doesn't hurt as much...although it is the threading part I can't stand.

IVIG is much better than the ICU...you certainly don't want to have breathing problems back again

Take care

Hi Erin
Wow sound like you had a hard time last time, I don't blame you for not liking needles now!! I really hope all goes well for you next week.
I'm one of those lucky people who has never had a problem with IVIG, only a few problems with people who can't insert IV needles, I told the doctor at my last visit!! ( acouple of weeks ago when I was sick, but no IVIG) I said "That really hurts there, and usually they are inserted aroundabout there" and pointed, and WOW he listened and put it in there!! I now dont care who is offended by me politely telling them it hurts, and they may like to try where I tell them, I have after all been having it done for six year, and hey I think I know my body better than them!!

Will be thinking of you, take care
redtail

I will be thinking of & praying for you. I certainly believe that is what we CAN do for one another (there is so much w/ this awful diagnosis that we cannot do ). Good luck, stay strong & keep us up to date on your treatment & on how you are doing.

Nancy Lee

hi, I am new here and just wanted to mention that you don't have to go inpatient in SA if it is not necessary. I go to the infusion center on Stone Oak drive every two weeks for my IVIG. If you'd like to find out more contact me. It is very easy to accomplish.
God bless
Deb

I hope it won't be as bad as you think. Do you have someone close to you that you can talk with about your anxiety for needles? It's sounds like you need more than just a little cyber-hug.

Best wishes and a big hug
Snifhvide

Hey there! Sorry I didn't respond sooner, but I just opened this up a few minutes ago.........So when were you diagnosed? Who is your neuro? What were your symptoms? How did you get so lucky as to get your IV IG infusions at Stone Oak? For whatever reason, Dr. Ibrahim makes me go to the Methodist - I was there last week having plasmaphoresis and then IV IG - not fun! I'm having a rough week, but would love to get together with you soon! When you get a chance, please email me and let me know what's going on. It would be great to share with someone here in SA! Take care! Erin