• Anonymous
      January 7, 2008 at 10:31 am

      I have had no problem with my insurance paying for everything, tests, ivig etc. I have a private insurance plus my medicare. i never saw a bill.
      Now all of a sudden i am getting stuff left and right. Denied, not medically necessary! WHat????? They have paid it all this time, over a year and now they say no. I have my doctor working on it but i just wondered has anyone experienced this?

    • January 7, 2008 at 12:48 pm

      LISA< DON"T WORRY!!!! We just went through the same problem. All it took was a letter from the doc, and our ncv/emg results showing a worsenning w/out ivig. We are starting a regular schedule tommorrow. The doc wrote ongoing for the next 2 years to be evaluated at that point and spread out. Good Luck, Dawn Kevies mom

    • Anonymous
      January 23, 2008 at 4:31 am

      I too am having problems with medicare not wanting to cover my treatments of IVIG and PP. They have denied me since the beginning of January for any coverage stating “not medically necessary”. They have been covering everything for me for over two years and all of a sudden they don’t want to pay. I appealed their decision and medicare thinks they have been gracious by approving a one time treatment of IVIG. My doctor has written a letter telling medicare that the IVIG is vital to my life along with the blood thinners that I have been on since 1996 for another condition and I received the denial yesterday. I don’t undestand why they have the right to turn down something a physician states necessary, and medications necessary to keep me functioning! Any suggestions? I was thinking about contacting the Governor to see if he could help me. In the meantime, I have been on IV antibiotics since November. While I was in the hospital in November having PP and a loading dose of IVIG I got cellulitis on my face. I was treated in the hospital for the infection that ended up being MRSA and sent home on oral antibiotics. Once finished with the oral meds, the cellulitis then returned with full force and I ended up septic and back in the hospital. I was treated for 10days with IV antibiotics and again sent home on oral meds from the infectious disease doctor. Again, once finished I was sick again, this time with endocarditis w/vegetation in the right atrium and mitral valve. I am now on IV, at home, Vancomycin, Gentomycin and oral Rifampin for a minimum of 12 weeks. I now need O2 constantly or I turn blue and almost pass out. My doctors have conveyed this information to medicare trying to explain that I am at risk for a relapse of CIDP because I have an infection and have not had my IVIG. Still waiting to hear their decision. Sorry this is so long, I’m not even sure if this is the right place to post this. It sure felt good getting this out, it’s the first time I’m able to talk about it. You are all in my thoughts and prayers. Thanks for being here for me.