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Junior Member
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Join Date: Apr 2010
Location: Texas
Posts: 13
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Junior Member
Join Date: Apr 2010
Location: Texas
Posts: 13
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My IVIG Treatments, etc...:-/
Hello All, 
I know I've been away from the board since I posted about having the spinal tap. Well, the tap came back and they found inflammation in my spinal fluid. My neuro said that it could possibly be the very early stages of CIDP. The inflam. levels were a low % but enough to warrant IVIg treatments that my Blue Cross is covering and I finally started Monday. I was very excited to finally have some sort of diagnosis and treatment plan!!
Well, the first day went well. Very long 6 hour IV infusion done from a top notch home health org. out of Houston. I seemed to tolerate it very well and was up and around that evening just fine. About 3 hours later I started feeling a terrible aching up the back of my neck and then soon a full blown severe throbbing headache that left me nauseated and curled up in bed. The nurse was notified and after the recommended benadryl and darvocet it seemed to subside.
Next day the nurse returned and as soon as she started the drip my iv site was throbbing and soon there after my HEAD!  Excruciating headache like I've never felt before. They had to immediately stop the drip, inject benadryl and solu-medrol. It started letting up immediately. My body was rejecting the infusion. Attacking as if it were an intruder.  After a couple hours of monitoring and strict instrucitons, the nurse left and I remained in bed asleep from the meds. Then it came back!! Severe worse than migraine like pain. Went on all nite long...got more solu-medrol and darvocet and kept it bareable until this a.m.!! After 2 more solu-medrol injections today I am 90% better. But no more IVIg until we see what happens next.
I am trying not to get discouraged as I can already tell a difference in my PN in my feet from just the one day treatment!! I hope they can get me stabalized with the steroids and I can finish the cycle! I'm praying for the best news possible.
Thank you all for listening. It's going to be a very loooong summer. I just wanted to vent and share this with you and alert anyone who may be about to have a course of IVIg. I will keep you posted as I can. Much love, ~Mindy 
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