History of CIDPUSA WEB SITE
Mark Bower who suffers from C.I.D.P. had supported this website tohelp support patients suffering from autoimmune diseases specifically C.I.D.P. Mark Bower was diagnosed by Dr. King Engle Mostly this disease is misdiagnosed and patients suffer for their lifetime without a diagnosis. In many patients demyelination of the Phrenic nerve leads to difficulties in breathing and death. Mark was diagnosed by Dr. King Engle at USC, he was exposed at work to jet engine fumes resulting in weakness, numbness , fatigue and visits to many many doctors.
This site is created to help teach patients where to find resources and help if you have autoimmune diseases.
We are aware of patients who were told by their neurologist that they had ALS. They were also told that there is no treatment for this. However they did not consider that CIDP can also cause both central and peripheral lesions. So CIDP can mimic ALS symptoms. Treatment with IVIG has brought these patients back on their feet.
Depending upon the time it takes from initial weakness and onset of the case to a most serve point of paralysis is just one of the factors which aid in the eventual distinguishing between these diseases.Guillain-Barre Syndrome (GBS) is considered the short-term, or an acute variant. From the beginning of the disease and it's initial weakness or fatigue to the eventual complete paralysis of one's body most likely takes place within a matter of hours or just a few days. GBS routinely leads to a complete paralysis throughout the peripheral nerves and may also lead to use of a ventilator to aid in breathing for the most severe cases. The prognosis for GBS is promising, with many patients left with minimal numbness or tingling as it's only physical scar. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a long-term condition, coming on over a long period of time, within several weeks or even months in some cases. Use of a ventilator is not needed in as many CIDP cases, but the prognosis is also not as promising. CIDP victims may be left with long-term weakness or even permanent paralysis.
It is important to keep in mind there are also many in-between variations off GBS and CIDP. Some many experience reoccurring setbacks, others may have only minimal weakness of tingling as the whole disease course.It takes not only the knowledge coming from the medically trained to fight this disease but also the support of family, friends, and a positive personal attitude to deal with these diseases, no matter what the ultimate prognosis may be. This web site is out to provide not only the facts from the medical field about these diseases but also from the people that know first hand what the disease has done to both them and their lives. Take look around, following the links below of some of your most asked questions in order to provide you with links to what the Internet has to offer and the support groups we have found most helpful.Proceed toTIPS by Earl
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