Hello Everyone, Finally I am back on rareshare. I have been approved by my ins. for IVIG. But not with out a fight and 3 visits to the hospital in July and 1 in August. I have been having attacks back to back these days and what a roller coaster ride it has been. The last stay in the hospital was hard I could not keep the fluid off very long. While there this last time my husband and I decided to start the IVIG on our dime. We talked with the CFO of the hospital to work a deal with us. So I had my first treatment on Aug 8, 2011 and Aug. 9. Everything went well and while at the hopital the ins. co. approved the IVIG for Sept. for 6 months. We will appeal again on the 5th month for another 6 months. I did have a terrible headache and sick to my stomach for about 36 hours. I start my next treatment this Thursday Sept. 8 & 9. I felt pretty good for about 2 weeks, but now I am having swelling the last few days and know that my body is ready for the next treatment. One question I do have, after the IVIG few days later I kind of broke out of little bumps on my legs that itch like crazy sometimes. Has anyone had this? It is more around my ankles and knees. By the way thanks to all who helped with info on fighting the ins. co. We sent so many letters from other doctors and my own doctors on why i needed this treatment. I am praying that after this next treatment that things will get better. I am still very tired all the time and in pain. I also suggest to anyone with this that swimming in a cold lake really makes you feel really good. I have been several times and it is the only time I have no pain while in cold water. My friends can't take the cold water this time of the year so they just sit and watch. I will keep everyone posted on progress with the IVIG treatment. So gald to still be here after these last few months. So many people don't understand what we go through with this disease. Thank god for rareshare!!! Annamarie

I'm VERY glad for you, Annamarie! You've set a good example of not giving up. Most insurance companies always say "No" when asked to cover the large expense of IVIG infusions, but if your doctors can show that they've tried everything else already, and they can submit copies of the ever-larger literature showing the benefits of IVIG, the companies usually give in and give it a try. In terms of getting insurance renewals in the future, "nothing succeeds like success," so it all hinges on IVIG actually working for you. As to your headaches and allergic reaction, it probably can be controlled with more Benadryl and Tylenol. Speak with your doctor, but you should be able to take additional Benadryl and more Tylenol on an as-needed basis the days after the infusion. Good luck and don't forget to update your profile page, OK?

HI Annemarie. I am glad to hear things are turning out better for you. I also thought I would say that swimming in the cold (well to be exact freezing) lake is the only time I feel really good too- and like you, I am the only one in the water as it is far too cold for everyone else!! You have to smile at some things.....