The more I learn – the more confused I am.
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May 25, 2011 at 2:41 am
:confused: I am completely confused. There is simply not enough attention being paid to the horrible condition of CIDP. Out of thirty-three nurses and doctors now- (that I have asked) only ONE-yes-ONE had heard of CIDP. Most had heard of GBS- In fact, many even knew what the letters stood for. However, they didn’t have a clue as to what CIDP was. This is affecting so many people -all over the world. There is no reason this condition isn’t more clearly understood. Maybe we could come up with a small flyer explaining the condition and the signs and symptoms of it. Then each of us could make a pledge to mail these to nursing schools and schools of medicine and doctor’s offices and hospitals. The more I learn- the more confused I am. The more confused I get- the angrier it makes me. Most TRUE CIDP cases do follow a similar pattern. Most have similar symptoms.
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May 25, 2011 at 8:19 pm
Jean, is all matter of numbers.
CIDP rate is 1 in 100.000 people. In a small country there probably no more than ten CIDP persons, and probably missdiagnosed as fibromyalgia. The neuropathy that is better known is the diabetic neuropathy that is rated 1/1.000 or something like that. -
June 6, 2011 at 6:47 pm
Jean, from what I’ve read CIPD is a very rare disorder and extremely difficult to dx. In the neurology community it is not well understood. This has been conveyed to me at the Clinic where I am treated With Plasma transfers. As for my neurologist she is all over the place as to what I can expect. One major problem is that its onset can be slow and subtle, so smyptoms can be mistaken for some other ailment. Indeed not all of us have the same symptoms. I started out being unable to swallow many months before pain kicked in and I was hardly able to walk. Consequently a lot of neurologist simply would rather not deal with it. The worst part is that CIDP is a relapsing disorder. Things start looking great and suddenly down you go. Of course you’re right in saying that we have to bring it to the attention of mainstream medical science. We need more research grants to address the truly extraordinary things that go on. I’ve discovered a group of people who were dx with GBS only to be dx three or four years later with CIPD. Did the GBS turn into CIDP or are the two condition so closely related that it is more common than we know for GBS to become CIPD? I’m like you; the more I read the less I know. All the best. :confused:
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June 9, 2011 at 8:55 pm
Yeah,
Its not Freakin Rocket Science, c’mon, just another autoimmune causeing specific symptoms. When the PA comes into see, I say, Just Go, you don’t even have an name badge. I’m not gonna spend an hour trying to bring you up to speed, like c”mon, go treat an ear infection or something. LOL
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