re: For those where CIDP attacked the autonomic system…

February 28, 2007 at 4:02 pm

As my CIDP has progressed, I’ve begun having signs of autonomic involvement. My neurologist has said I have an autonomic neuropathy too. The IVIg is causing improvement in both, thankfully!

So far my autonomic symptoms have included trouble swallowing, trouble getting a deep enough breath, temperature regulation, and not feeling the need to urinate (no “accidents,” just lack of awareness– so I just decided to go every few hours, like on a schedule. When the autonomic neuropathy is flaring up, it also sometimes takes realllllly thinking about it to get a stream started– almost like there is muscle memory, but things are slow… similar to my experience driving, typing, and tying a bow!) When the swallowing is bad, I also get the hiccups frequently (including [U]during[/U] my infusion– not sure what that’s about!) I almost always keep water and some kind of food nearby, for if/when something gets stuck– the water often can’t dislodge it, and I resort to a piece of cracker/fruit/whatever to budge the stuck piece.

The IVIg is helping now, but in the past I’ve also had trouble with sweating. My temperature used to always be below “normal,” it’s now always [I]above [/I]normal (between 100.0 to 101.5– this is not a fever, it’s my “new normal.”) I am unable to tell if/when I am feverish, or even if I’m hot or cold (sometimes I swear it’s both at once– and very uncomfortable, at that!)

I look at it this way– humans organized and named the systems of the body, arbitrarily creating a division between central and peripheral nervous systems. But do our bodies recognize that division in the same way, or is demyleination sometimes just demyleination, regardless of where it occurs? (I picture my demyleination approaching the border, looking both ways and seeing no discernible difference, and asking why the humans thought there was a difference there. Then marching right on across of course, with no regard for our labeling system, haha!)

For what it’s worth, when it felt like I couldn’t get enough air, my SAT rate was actually fine– my body had learned to compensate, even if it sometimes didn’t [I]feel [/I]like things were working properly!

Best of luck to you– this development was one of the scariest yet… but it’s all pretty much under control once again, thank goodness… and I’ve learned yet another chapter-worth in this unasked-for adventure!