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It Changed My Life.

When I was ten years old, I was an athlete until it happened. I started falling down and losing my balance for no apparent reason. My doctor had no idea what was going on, she even suggested to my parents that I was faking it for attention. It was quite a struggle to get referred to a neurologist, but less than five minutes into my appointment the neurologist diagnosed me with Guillain-Barre Syndrome. I was immediately admitted into the hospital and began a torturous series of medical treatments. I almost died. I didn't recover with the characteristic quickness of Guillain-Barre Syndrome so I was diagnosed with the Miller Fisher variant. That too was an incorrect diagnosis. I didn't recover within six months. I began to relapse. Then the awful truth emerged - I would have this terrible disease for the rest of my life. I had the chronic version of the disease - Chronic Inflammatory Demyelinating Polynueropathy. It's been over a decade since I became ill, and I cannot begin to imagine how differently my life would have been if I had never become ill. I know things would have been different. I think they would have been better. I'll never know.

My disease is very rare. Not many people, not even many doctors know about it, so here's some information taken from the National Institute of Neurological Disorders and Stroke:

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

JAdam JAdam 19-21, M 7 Responses Dec 10, 2007

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hi people, i may have a site for you all to read up on, its<br />
www.gbs.org.uk it doesnt just deal with gbs but cidp as well which is why i use it as my husband has just been told he has it. hope it helps. take care

I just got diagnosed today with the chronic form and it is sad yet at least now I know what I am dealing with. I have noticed that there is not much information oin this disease as it is rare and hopefully through people like us, others will become educated on the illness and recognize it earlier than I did. Thanks fo rsharing

I was dx with CIDP being Immuno, not Inflammatory, are these two the same thing?

Hi F000191.<br />
I have CIDP too - not in Aussie but in NZ.<br />
Being treated by a neurology clinic in our local area with Ivig- as far as this country goes there IS help available, you just need to get somebody in the medical profession to take your condition seriously. In my case it took 15 years before a diagnosis was reached & by then the damage done was such that when I had nerve conduction tests there was so much axonal damage that they took even longer to decide that CIDP was my problem.<br />
If you're interested I'm taking a supplement that, while not a cure, makes me a lot better & stronger & am happy to share that info with you.<br />
Good luck, don't give up hope

I was also diagnosed in 1998. I got the numbness under my feet and the tip of my fingers. I was told ,there was no real cure for it or the "trial" treatments had side effects. So I did'nt do anything for it. There was no change since then....

Hi am an newly diagnosed with CIDP only a few months ago. Not a lot of information to be had, and each time I look it up someone else says something different. Cannot locate a support group to find someone to talk to even. On Prednisone (made me emotional) Imuran and now they want to try IVIG next week. any help for someone in australia?

Thank you for sharing your powerful story. As rare as your illness may be, I hope you find some kindred spirits here.