CIDP is an autoimmune disease where the body’s immune system attacks its own nerves. Autoimmune diseases occur when the body loses its ability to differentiate between itself and bad foreign bacteria and viruses. In CIDP, the body sees nerves as foreign and begins attacking them.
There are approximately 7 trillion nerves in the human body. Nerves are surrounded by a protective coating called Myelin much like an electrical wire is protected by a plastic coating. CIDP first begins by attacking the protective coating or Myelin. CIDP usually begins in the feet with what is commonly called ‘foot drop’. Patients develop weakness in their ankle and as a result may trip over their feet. They may also notice numbing or tingling in the feet and toes. CIDP progresses symmetrically, that is, on both sides of the body equally. If not diagnosed early, this numbing and tingling, spreads to other parts of the body and may cause permanent damage including loss of sensation, shortening of the muscle, weakness, difficulty walking and other symptoms.
It is important to establish good communication and relationships with your doctors. Many doctors will have never seen this condition because it is rare. Keep a diary of your symptoms and come prepared with questions to assist the doctor in his research. One of the first tests you may be given is a nerve conduction study or EMG or NCS. Other diagnosis methods may include blood tests to test the antibodies in your system, spinal tap or nerve biopsy (sural nerve biopsy). There are a few doctors nationally that specialize in the diagnosis and treatment of CIDP. In researching CIDP we found The GBS/CIDB Foundation international and on their site, they list a few Centers of Excellence we have not researched neither the foundation nor the doctors but our mission at Project Autoimmune is to provide you with resources. Like most autoimmune diseases the patient and doctor(s) will have many interactions before a diagnosis is made. Early diagnosis in CIDP is the key. Here’s why. If you can get diagnosed in the earlier stages when only the Myelin is being destroyed, the nerve damage can be limited. If diagnosed in the early stages of nerve damage it can be limited. Some doctors suggest that if the damage is stopped, the nerves may regenerate and reverse the damage. You will still have the disease and it may rear its ugly head again but with continued care and early detection your prognosis is much better.
Because CIDP begins with the immune system, it only makes sense that you and your doctor’s first effort would be to alter the immune system and get it to stop attacking the nerves. This is done first through immune suppressing drugs. A few common immunosuppressant drugs are cytoxan, imuran and cellcept. Another treatment option that seems to show promise is IVIG which pulls antibodies from thousands of healthy individuals and is infused into the CIDP patient. Gamunex is one such IVIG provider and will be presenting a Q & A on February 16 at 6PM. Plasmapharesis may also be utilized to take the patient’s own blood and filter out the offending antibodies.
We are providing a list of terms we came across in researching CIDP for your use.
Glossary of Terms Related to CIDP (PDF File)