Reply To: Anyone with Sensory Predominant CIDP?

March 29, 2018 at 12:06 am

I am late to this thread but thought I would reply. I was diagnosed with GBS in 1982, and CIDP over a span from 2000-2003. I have both sensory and motor neuropathy, but the sensory neuropathy has always been most troublesome. IVIG and steroids provided a little relief, but I stopped these in 2006. An underlying condition was not discovered until 2014, and since addressing that, I have seen some unexpected improvement. I have a rare type of carnitine deficiency that is causing several problems. When I started daily supplementation with carnitine, the sensory neuropathy improved greatly, along with balance, and time to fatigue when walking, etc. Not one neurologist offered this as a potential cause, or as a possible therapy. And I saw some well respected neurologists. My point is, rare cases will many times escape good doctors, and sometimes it pays to look outside of the specialty of neurology for an answer.