Greetings All!
I have another question for those of you getting IVIG........
I have been getting the infusions every week for almost 7 months now. We decided to go out of town over Thanksgiving so I missed an infusion......and man am I paying for it now! Last week after my infusion I ached SO bad and was just miserable....like after my first few infusions! Then I had another infusion yesterday and here I am in terrible achy pain again and even have buzzing.......UGH! Has this happened to anyone else after missing an infusion?? If so, how long did it last?
I hope everyone is ready for the holidays!

Roxie how many are you suppost to take,now just curious,what if Dr. or
insurance,all of a sudden said that's enough no more,I mean has that
ever happened,hmm i wasn't sure how to ask this any other way,I mean
if you felt that bad,well it's not going to happen. But that sounds awful.
It's late and i'm sleepy but spotted your post. No more ouches,feel better,
Sue

HI Sue!
I'm sure it has happened to some but hope I won't have to face it. My insurance has been paying 100% since the end of May, so I have been very lucky. Starting Jan. 1 I have to pay the first $3,000 for my insurance and then it'll pay 100% the rest of the year again...whew!
I'm sure I'd be in major pain again if I did have to stop the infusions. They are helping me, I can tell that when I missed the one over Thanksgiving.
I wish I could get the Thyroid medication problem figured out because taking that med helps my pain too.......but it really bothers my bladder because of my Interstatial Cystitis.......seems there's always one problem or another!
Happy Holidays Sue!

Roxie, between Interstitial Cystitis and neuropathy, you have been dealt one lousy hand.

I know about the agony of Interstitial Cystitis because I had all those symptoms (years ago) for over 4 years. I thought I would lose my mind.

That pressure (down there), where you feel like you have to urinate, and then you urinate just fine, but the pressure is still there.

I do not know how I survived that. But I'll never forget that one day while the hot water was showering down upon me in the shower. It all went away. After all those years. I used to use heating pads. I went to doc after doc, specialist after specialist, I took sonograms, cystoscopes, trans vaginal this and that.

They found NOTHING!!!

They believed me because they knew I was miserable. Only one time, when they gave me the uring test, did they actually find an infection, and antibiotics cleared that up, But for most of those 4 to 5 years, there was no infection, just those horrible symptoms.

I don't know how you survive all of this. My hat is off to you, please know that.

Good Morning and Thank you Mel!
How are you today?
I totally agree about being dealt a lousy hand....with those problems you mentioned AND the Barrett's Esophagus some days are real doosies! I usually try to grin and bear it but some days....like this weekend I just look in the mirror and say "WHY ME??"
I'm having bladder surgery on the 18th and I'm hoping it doesn't send my Cystitis into a tizzy!
I hope you and Alan have a great holiday!!

The 3 things that were the most painful that I remember having,
were Endometriosis,the IC,do either of you remember having that orange
dye injected into your urethra,and if it was put in wrong,you ended up not
being able to pee or tons of blood clots,and the pain and dying..I perfered
the orange pills and antibiotics,(they could make you sleepy).. and
polyneurathys..

I spent this morning and a few hrs. yesterday with my Neuro,she was
in India before I was in Barnes, they had been planning on this trip
for sometime..Her husband is Chief Of Pulmonary at the hospital..
2 weeks before they came home ,she had a freak fall and shattered
her leg. They finally got her back in a medicAL PLANE,AND HER HUSBAND,
CALLED AND ASKED IF I WOULD SIT WITH HER...SHE IS SO TINY
IN THAT BED AND IN A GREAT DEAL OF PAIN..wE WILL BE IN REHAB
TOGETHER..sO NOW WHEN SHE CAN STAY AWAKE,I TOLK HER I
WOULD PICK HER BRAINS...THEY HAD TO PICK ME UP THIS MORNING
ICE STORM ALL NIGHT..hER HAIR GOES TO HER WAIST THE AID DRY WASH
IT AND I MANAGED TO BRAID IT,I GUESS PAIN ESCAPES VERY FEW IN ONES
LIFE TIME..WELL HOPE YOUR FEELING BETTER ROXIE,DON'T FEEL SO GOOD
AND BIG FAMILY GET TOGETHER NEXT WEEKEND,SO WE ARE CLEANING
THIS ANTERNOON..i HAVE SOME KINDEY PROBLEMS RIGHT NOW.GOING
TO TRY AND POST SOME PICTURES OF MY GRANDSON MEL,YOU BOTH
STAY WELL AND HUGS TO ALL..sUE