Reply To: New- CIPD and Central Nerves/ Cranial

October 2, 2016 at 9:01 pm

Hello Linda,

As a fellow CIDP sufferer, I had very minor face cramping and occasional difficulty with my eyes and slurring of my speech. The symptoms were always mild, so I never made much of a fuss about them. I did occasionally mention them to my neurologist, who would brush them off. I have a great deal of respect for him, so I took his “brush-off” to mean that they indeed unusual symptoms. I am confident that if they were more of a problem, he would have take them more seriously.

There are 13 cranial nerves. The terminal, olfactory, and optic nerves are considered part of the central nervous system. The other ten are considered peripheral nerves. So, while unusual (even in an unusual disease), CIDP can affect them as well. Indeed, several years ago there was a young girl with CIDP whose first sign of relapse was problems with controlling one of her eyes.

Of course, your symptoms could also have a CNS cause, just as MS patients have peripheral pain, even though there is nothing wrong with the peripheral nerves. Unfortunately, there is no good way to test these nerves. Think about trying to do an NCV test on your head. Uhh; it is bad enough on the arms and legs. A biopsy is pretty much out too. That leaves just symptom response to treatment. You might need to keep a diary of symptoms and treatments. Be objective in the symptom report, because the treatments may not work right away.

Godspeed in getting a treatment that works.