Re: first post on thread
My 4th Nerve conduction test shows worsening axonal neuropathy but no demyelination.
Does anyone have this ? Is this def not CIDP ? The neurophysiologist says it doesnt look like CIDP cos there is no motor involvement.
My EMG/NCV tests showed mostly axonal damage rather than demyelination, although I had motor, sensory, and autonomic symptoms, leading to an uncertain diagnosis of ‘maybe CIDP’. Nor did I respond to my first IVIG trial, compounding the uncertainty. My neurologist then referred me to a specialist, and for a nerve biopsy, which showed demyelination. However, my condition continued to worsen over the next three months, even while getting IVIG, before it finally stabilized. There is so much variance in the presentation and course of CIDP, which is why it is so hard to diagnose and why many people really need to see a specialist rather than a general neurologist. I have read some of your other posts, John, so I have a sense of your frustration with the medical treatment you have received. There must be some neuromuscular specialists in the UK, and I exhort you to keep pushing until you can see somebody who can make sense of your condition.