Help, newly diagnosed 5-24-18

    • May 25, 2018 at 6:42 am

      So I am newly diagnosed and my neuro wants me to start IVig asap…. Problem is with my job. I’m trying to figure out what to do. Short term disability and file for long term so people at work can donate time to me. I don’t know, I only have 11 hours of time at this point. If I run out, it puts off treatment and I just don’t know what to do. Doc said that the nerve study compared to 6 weeks ago shows progression of disease. I’m scared and mad and sad and pissed all at the same time right now. Any thoughts?

    • May 25, 2018 at 10:30 am

      Hello there,

      I don’t know what you should do about your job, to be honest…but I would get treatment in any way you can. I waited a year before I got treatment because I didn’t want to admit that I have CIDP. I am now using a wheelchair most of the time, can only walk short distances, have trouble with stairs, my bladder incontinence is worse, my eyelid is starting to droop on one side, have extreme neuorpathy pain, etc. It has definitely gotten very bad, to the point where I went to the ER one day and they admitted me to the hospital.

      I know your job is very important but I don’t know, maybe talk to your employer? I am not sure…I just know that treatment, early, is so, so important.

      Good luck! Solidarity.


    • May 25, 2018 at 2:13 pm

      Thank you LWolf. Yes, I know I must get the treatment. The most embarrassing thing with this so far is that I have wet myself, twice over the last 3 months. I can’t believe that… I have been dealing with this for 2 to 3 years, and has only gotten worse. I have really noticed the rapid decline over the last 4 to 6 months. I’m afraid to get out of bed in the morning because I seem to have a new symptom every few days!

    • GH
      May 27, 2018 at 5:24 pm

      Earlier treatment generally leads to better recovery.

    • May 27, 2018 at 5:55 pm

      See if you qualify for in-home treatment. If you do, they may be able to accommodate your work schedule better than an infusion center. I was diagnosed Dec 2017, Treatment is IVIG (Gammagard) for 5 days consecutively. I was working at the time and the pharmacy determined in-home would work for me. I only had to take a few hours off work late in the afternoon to get infused.

      Good luck,


    • May 28, 2018 at 12:53 am

      Thanx Buzz. I’ll check into that!

    • July 6, 2018 at 3:31 pm

      Bwade, Did you get everything figured out on your treatment? You didn’t mention your age. I was 65 when I was diagnosed so my only option was to have my IVIG done at an infusion center. Medicare part B covers it @ 80% and my supplimental picks up the remainder. If I would have chosen to have home infusion Medicare Part D would cover and would cost me $$$$$$$. I currently have infusion every 3 weeks for two days. I go first thing in the morning when the infusion center fisrt opens and go to work after. I only miss about 2 1/2 hours on those days. It sometimes is a struggle but my job does not require much physical labor.