Recently diagnosed cidp

    • December 20, 2017 at 11:37 pm

      Hello all,

      I was diagnosed with cidp 3 weeks ago. I found this forum today and have been riveted for hours reading everyone’s stories. I am currently awaiting insurance approval for ivig treatment. I have so many questions, I don’t know where to start. I know I must get through the depression and “why me?” thoughts running through my head. The positive post I have read give me encouragement. Bye for now, Buzz

    • December 29, 2017 at 2:05 pm

      I was diagnosed with CIDP at the end of September and did not start IVIG until this November due to insurance coverage/issues. I originally was being set up for home infusion but changed to infusion center because of Medicare. I am on original Medicare and the IVIG must be done in hospital or infusion center in order to be covered under part B. Home infusion is covered under part D [prescription plans] which would have been very expensive for me. I am fortunate in that I signed up for Medicare in August so I could get a suplimental plan F without issue [open enrolement within 6 month of medicare start].
      My CIDP is slow progressing and I just kept thinking I was getting old but finally said something to my doctor during my yearly checkup. He sent me to a nurologist who did all sorts of tests and ended up diagnosing CIDP. I get 40G of Gamunex given over 2 days every 3 weeks. A few days after my first treatment I noticed my feet didn’t feel the same; not normal but they felt different. Also one of the observations my doctor made was that i never moved/swung my left arm when i walked; only my right arm. I noticed I was swinging my left arm when i walked, not the full stride i did with right but i did swing it. I even purposely held it at my side then walked and just let my arm do whatever it wanted to and it swung. I also noticed i did not plop my feet like i had normally done. When i walked very slowly i always moved side to side [my wife would always tell me i looked like i was going to fall over]; After first treatment I was steady on my feet when i slowly walked. I still have some issues with hands and feet but can say with 100% certainty that the IVIG treatment is working for me. I did notice that on the third week after my first [prior to my 2nd treatment] that i was starting to plop my feet again but not as bad as before. My nurologist wrote the prescription in a way leaving it up to me whether or not to go every 2 or every 3 weeks. I may change to two weeks if there continues to be the decline prior to next treatment. The nurologists nurse informed me that with the every 3 week choice I may see a little digressing but it should be less and less as treatment continues. I go back to doctor at the end of April.
      I hope you have great success with your treatment Buzz.

    • February 10, 2018 at 12:46 pm

      My nerve pain is not as bad as it was last fall, probably the high point pain wise. It has not been as bad since the steroid treatment in late December. The scary part is the weakness. I am growing weaker and weaker. I walk close to normal in the mornings, when I have the most energy, but by 2P or so, I describe my walking as, “like a caveman”. I slap my feet down very flat footed, rather than heal toe, heal toe. I am still working, I’m trying very hard to make it to April 30th when I will receive bonus for 2017.
      Good news is, I was approved for IVIG today. It’s been seven weeks. I had to get involved with the insurance company and my Dr’s office to ask Dr’s office to send the needed clinical notes to the insurance co so they could make a determination. One would think the Dr’s staff would know this since he boasted about prescribing this close to 1000 times.
      Does anyone know if I will be able to get off Lyrica (600MG/day) when I start the IVIG treatment?

    • jk
      February 13, 2018 at 10:19 am

      Buzz, although there may be a connection between IVIG and stopping Lyrica I never noticed one.

      Ideally, the IVIG will slowly improve things and then you can ask your doctor about titrating down and off the Lyrica.