Update to the Update below: I have changed my mind. I understand that my diagnosis does not have a name. But we live in a world of diagnoses and I like having the context of a name and the support of a community. At this time, I am continuing to refer to my diagnosis as CIDP, knowing full well I do not fit cleanly into the CIDP box. Perhaps one day I’ll be allowed to give my diagnosis a name of my choosing.
Update: I am in the process of updating this link from ‘What is CIDP’ to ‘What is an Idiopathic Neuropathy’. My diagnosis remains complex and murky. I will continue to rely on the CIDP community for support, but my Neurologist and I agree that my diagnosis is not CIDP.
CIDP (sēīdēpē) is a nerve wracking (literally) neurological and autoimmune disorder (it may be a disease or condition, not really sure). An easy way to wrap your head around CIDP is to compare it to Multiple Sclerosis. If you think of a tree, MS is the trunk (meaning the brain stem and spine) and CIDP is the branches. CIDP starts distally, meaning with the fingertips and toes, working its way inwards (at this time, it is not known to cross the blood brain barrier). In CIDP, the body sees the myelin sheath (the fatty coating on my neurons) as a foreign invader and attacks it! Pow Pow Pow! The result of this is a formation on my neurons called Onion Bulbs (cool looking, right?).
These formations cause weaknesses and paralyses… so I walk like a zombie penguin. It causes other things too… but the drop foot is why I have a purple cane.
CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. That’s short for Chronic Inflammatory Demyelinating Polyradiculoneuropathy. I tire easily, so I just call it CIDP. My variant also includes some features of a Multifocal Motor Neuropathy.
Not many people have CIDP. If you’re worried you have it, you probably don’t. If you do have it, getting diagnosed will be a total nightmare. Diagnoses occur through EMGs, Neurological Exams, and Nerve/Muscle Biopsies. A lot of people (like me) with CIDP seem to have a variant (meaning their CIDP is atypical in some way that baffles very smart people). Some doctors may treat your symptoms as CIDP if you have a variant. Other doctors won’t. Since I have a variant, I technically don’t have CIDP, but my variant doesn’t have a name yet. So I chill contently with the CIDP community. I may switch it up someday when my variant gets a name. But to me, it’s just a technicality with miniscule differences (I’m sure SuperNeuro is cringing right about now).
There’s no test for CIDP. There’s no cure. There are a few treatments that may or may not work. There’s not really even a set of rules or standards on how to proceed once you are diagnosed with CIDP (or one of its variants). CIDP probably won’t kill you, but it will make you miserable at times. It’s considered acquired, but also hereditary. So yeah, you either have it or get it, not really sure on that one either. It causes pain in some, but not all. It causes weakness in some, but not all.
So yeah, that’s CIDP in a nutshell. Any questions? You can read more here.
Also, I’m not the only one who has CIDP. You can read about William ‘The Refrigerator’ Perry’s battle with CIDP.