Thursday, April 4, 2013

My Story



 I have had CIDP for over 20 years and have been hospitalized more times than I can remember. Sharing my CIDP story is not something that comes easy for me. Explaining to people how you become so weak that your wife has to help you put your shoes on or how when you are laying in bed you feel like you are drowning because you are too weak to roll over are not the things that come easy for me to share. However, I feel the time has come for me to raise awareness for CIDP.

I was 12 years old when I noticed that I was becoming clumsy and also I was suffering from severe back pain. At my family doctor, my issues were dismissed as growing pains and a possible pulled back muscle. I was prescribe muscle relaxers and sent upon my way. As time past the muscle relaxers were doing nothing to stop the back pain. So back to the family doctor we went. At this visit it was decided that something out of the ordinary was going on and we were referred to an orthopedic specialist. The orthopedic specialist took one look at how I was walking and referred me to a local neurologist. 

At the neurologist, he had me lay on the table and close my eyes while he poked my legs with a pin; I felt nothing. I think my mom nearly fainted. I was immediately scheduled for an MRI to check for a tumor on my spine. The MRI revealed nothing. My local neurologist was wise enough to know that whatever I had going on was beyond his comfort level. At a loss, he referred me to neurology department The Ohio State University Medical Center (OSUMC). This is the place where we would find answers.

During our visit at OSUMC, I was put through a battery of tests. I do not remember all of the test, but the one I will never forget is the EMG(electomyography)/Nerve Conduction. This test is basically shock therapy. The doctor sends electrical current through legs and arms in order to see how responsive the nerves are. After all the tests were in I had a diagnosis and I was being admitted into the hospital to begin treatments.

Once admitted, I was started on IVIG. I do not remember how many days of IVIG I received, but I do know that I celebrated New Years Eve suffering from flu-like symptoms from the IVIG. I did not tolerate IVIG well, so I was started on 60 mg of prednisone daily. Prednisone worked well for me, but I could not reduce down below 10 mg without relapsing. However, I continued to take prednisone throughout most of my teen years until the side effects started. From the prolonged use of prednisone I developed osteoporosis. Over the past 20 years I have tried a variety of treatments. Beside the IVIG and prednisone, I have tried Imuran, CellCept, Cyclosporine, Solumedrol, Plasma Exchange and Dexamethosone. I have only received minimal success with each treatment.

After relapsing about 8 years ago, I decided to try IVIG again (once every 3 weeks). This time the IVIG seemed to be helping; and for the last 3 years I did not need to use a walker, or cane. For the most part I felt like I had my CIDP under control. Then about a year ago I felt a relapse coming back despite the fact I was now receiving IVIG weekly. 

Over this past year I have continued the IVIG and I have had 8 Plasma Exchanges; all with no lasting improvement. I have progressed from a cane to a walker to now a wheelchair. It was out of this frustration that I began searching for answers. During this search I kept finding information about stem cell transplants for patients with CIDP at Northwestern Hospital in Chicago. After reading through as much information I could find and speaking with my neurologist I called Northwestern for information. On February 19, 2013 I received a phone call from Northwestern saying I was accepted into the stem cell transplant study. 

Ann and I are writing this blog as a way to bring awareness to CIDP and stem cell treatment. I thank you in advance for taking this journey with us.


















4 comments:

  1. You are very brave for sharing your story. Thank you. I hope this is the answer that you are looking for. Sending prayers your way.

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  2. Gerald Campeau
    Thank you for sharing your life story from what i have read of others involved in HSCT Trial you stand for excelant chance for a true cure for CIDP

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  3. Gerald,

    Thank you. I am going to continue to document the HSCT procedure as I go through it. I agree that the work being does stand an excellent chance for a true cure.

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  4. Thanks for sharing. I am praying for you!

    Heather Davey

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