CIDP

I have Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), a very rare autoimmune disease which has severely affected my mobility. My peripheral nervous system is under attack by my immune system. The myelin sheath which surrounds the nerves is damaged so signals from my brain cannot get through. I cannot walk unaided (use wheelie-walker around the house) and outings are accompanied and in a wheelchair. This disease affects patients in different ways and the treatments are also varied. If one patient responds to a certain treatment, it does not mean another patient will respond in the same way. There is no known cause and the prognosis is uncertain for each patient.

My symptoms began in late July 2008, shortly after my return from a wonderful overseas holiday where we walked everywhere. My legs began to feel "abnormal". I had to think about walking, taking each step, as my feet gradually became numb. I had numerous blood tests, three MRIs, CAT scan, nerve tests but it was some time before my "difficult" case was diagnosed as CIDP. I've been in hospital three times. Currently I'm being treated with Methotrexate and receiving fortnightly infusions of immunoglobulin (IVIG). So far there's been no improvement. I attend hydrotherapy three times a week, which is the only exercise I can now do, apart from walking (dragging or swinging one foot after the other) with my wheelie walker.

I've joined an on-line Yahoo discussion group which has been invaluable in learning more about this rare disease from others around the world who have it. I am optimistic that I will eventually have the treatment that will have me walking again. In the mean time, I try to have a positive attitude and live within my physical limitations.