Newbie w/many questions
June 29, 2011 at 7:22 pm
While I’ve been perusing this site for a month or two, and reading many of your own questions and stories I’m only now making the plunge and sharing my own experience with this newly diagnosed disease called CIDP. I had never heard of it before, only recently gotten used to being able to even pronounce demyelinating, and even explain the disease, but I’m still very confused and have a slew of questions. Let me admit first of all, that thanks to all of you I know a lot more about this disease than I could have ever learned elsewhere. I think one of my first questions is for the few women (compared to men) who have CIDP. Did your symptoms begin shortly after having a child? Our only child; a beautiful girl is now twelve. I had a dream pregnancy. Aside from being exhausted all the time I felt amazing. However, from the moment I had her I’ve been sick. Of course at the beginning one attributes it to the C-section, new exhausted mom, etc. etc. But year after year of seeing the doctor only to be told my exhaustion, pain, numbness, and weakness are all due to depression one begins to believe they’re right. I came to the point where I didn’t even bring it up anymore but rather learned to live with it. However, it wasn’t until last year when every symptom I listed intensified and progressed to the point where now I require a wheelchair or a walker because my legs turn to Jell-o and I fall on occasion. Even with a walker, though, I can only take a few steps because my hands and arms are also weak. The first time I fell was at home on the same night after my daughter and I returned from a Jonas Brothers concert on September 10th of last year. We had the most amazing time sitting or standing rather within an arms’s length of the performers. Little did we know this would be the last time I’d be independent enough to take our daughter anywhere. I still get a little emotional when I think about it; not for my sake but hers. The fall then triggered a series of MRI’s, a CT scan, lab work, nerve conduction studies, EMG, a spinal tap, a neurosurgeon, two pain management specialists, and two neurologists. The first neurologist was nothing less than a quack. Had he been on the ball I would have been diagnosed last December, rather than May of this year. It has taken 8 long months to get a diagnosis! I still can’t believe it’s taken this long. But I’m truly thankful we have a diagnosis although I don’t know what the future holds. I’m in amazing spirits thanks to my awesome husband, daughter, parents, close friends, and our congregation of lovely lovely people. I also remain upbeat because I know for a fact that things can turn for the worse and because of that I appreciate each and every thing I can do for myself. As bizarre as this may sound I thank God each time I take myself to the bathroom, each time I feed myself, I thank God for having a voice to continue in the raising of our daughter, and for Emily’smom I even thank God for giving me the ability to read about your daughter’s skating abilities….wow! I have a lot of questions for all of you; at this juncture about treatment. But I will ask about that another day so as not to overwhelm everyone.
August 16, 2011 at 9:07 am
Welcome. You will find much support and help here at this forum. I am a mother who was diagnosed earlier this year with CIDP. I am lucky though because I started symptoms in November 2010 after my flu shot and got diagnosed by February 2011. So my body only had three months to do damage to my nerves. I have been on IVIG now since March and have seen quite an improvement in my symptoms. Hopefully your neurologist will start you on the IVIg infusions right away. For the people that have a good response it can be amazing so get your strenght and use of limbs back. I am still trying to grasp the fact that my life is no longer as it was before CIDP. I have limitations now that I did not have before. My daughter is only 7 so I am gratful that I am pretty much able to keep up with raising her. I need naps and I can’t do as much physically as I use to but mostly I do what I need to be her mommy. I work full time too. I need to get infusions every 21 days but I am currently not on any other medications. You are on the right path. You now have a diagnosis and can start to get the right treatment so that you can start to improve and get better. Good luck to you. 🙂
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