Admitting I have CIDP

    • May 25, 2018 at 10:10 am

      Hi all,

      I posted for the first time about a year ago looking for a neurologist recommendation.

      For some background, I was diagnosed with GBS at age 8 and made a “full recovery” until about age 18 when I was working as an EMT in a local hospital and I started having weakness, pain, incontinence, etc. I couldn’t function in my job position and my supervisor sent me down to the ER. I was admitted to the hospital for a week, they didn’t know what was wrong, and they discharged me with a walker and told me to get an EMG. I never did. I stopped working and went on disability a few years after that for depression, anxiety, etc and my inability to function.

      I declined slowly physically up until a point where about a year ago, I came on here looking for neurologists in my area. I was recommended to Dr. Tabby in Philadelphia, who was awesome and thought I had CIDP. I got an EMG which showed some serious demyelination. I didn’t follow his recommendations, and now, I am mostly using a wheelchair to get around, dealing with a lot of pain, and starting to have eyelid drooping one side. I can walk short distances around the house, have trouble going up and down stairs, and I just got out of the hospital about a week and a half ago.

      I went to him again and admitted what was going on. He asked me if I would promise to get IVIG and do the treatments. I am getting another EMG to see where I am at, but at this point, it is mostly for my records and to show hospitals that I have CIDP. [I had an issue where a local hospital admitted me but disagreed with a younger doctor who said I had CIDP and the older doctors disagreed and wouldn’t provide treatment]

      I am getting the IVIG as soon as my insurance approves it at the infusion center. Hopefully starting in 1-2 weeks.

      I am disabled. I am sick. I need treatment. Hopefully, I can fight this and lead a better quality of life.

      Just wanted to share this with the group in case someone else has the same problem with admitting their diagnosis. You are valid and it is okay to be chronically ill. Don’t let your own fears stop you from getting proper treatment.

      I was scared of being in a wheelchair, but it has given me independence and life. I found a partner who loves me, wheelchair or not. He is feverishly trying to get me accessible accommodations. He is making his life accessible for me. Even I was trying not to do that.

      Love yourself. Love others. You are worth it.

      -<3 A fellow CIDP Warrior,

    • May 28, 2018 at 12:56 am

      How quick was your deterioration. I ask because I have noticed that my front hips are now hurting, making walking feel…. Funny I guess is the best way to describe it.