Hi Lisa, I’m new here, and just found this thread while searching. I was diagnosed with CIDP MGUS in August. I was told by the hematologist that my IgM was .49 above normal. I’ve been so overwhelmed by it all that I didn’t even ask what “normal” was! He didn’t find it necessary to do a bone marrow biopsy, but did do numerous tests for lymphoma, which were all negative. He did test for anti-MAG antibodies, but as of today, I don’t know the results. Or maybe I do…the hematologist said that all of my blood study test results were in, and the only thing that showed up was the slight IgM protein “aberration”. I’m guessing this includes the anti-MAG testing also. He left it up to my neurologist to decide which line of treatment to use.
He decided to start with plasmapheresis to try to remove the IgM antibodies. I had my first 3 treatments in the hospital, where they also installed a central line tunneled vena-catheter port in my chest (under anesthesia, thank goodness!!) I had one more in the outpatient clinic, and then 2 more a couple of weeks later on 9/12 and 9/13. I immediately noticed sensory differences! I can feel textures instead of everything feeling like hot sandpaper, like the texture of my skin and hair. I no longer had the feeling of gauze around my lower legs and feet, etc. I have been having Home Health Care Physical Therapy, and that has made me feel stronger, though I’m still having to use a walker because of my balance issues! In other words, I’ve seen some positive results from plasmapheresis…no miraculous cure, but at least something moving forward and not behind!
Well, my insurance company, Blue Cross Blue Shield, has decided they’re not going to pay for my plasmapheresis treatments because they are not covered under the terms of my contract!! WHAT?? Right now they are only looking at the 3 I received at the outpatient clinic…nothing has been mentioned YET about the 3 I received in the hospital. I’m hoping it is only a coding issue! The person I spoke to at BCBS sent the 3 claims back to a medical review board to see why the treatments were not covered. I am looking at a bill of over $18,000, and now I will have to put my treatments for October on hold until this is resolved. No fun!
Have any of you had this problem? Besides being overwhelmed with my diagnosis and symptoms, now I have to be overwhelmed with my insurance company!?!? Do you think it could be the MGUS part of my diagnosis? I really don’t know what to think at this point!
Thanks for letting me vent about all of this! I hope you are all doing well, and are having a weekend of less pain!