Reply To: Your Progression of CIDP

My husband was diagnosed with CIDP in July after a quick succession of symptoms. When we look back we can see that it probably started last fall when he started complaining about glare when he drove and had to start wearing sunglasses. The light sensitivity was followed with tiredness and fatigue, and then in April I noticed that his right foot seemed to lag and turn outward a little although he did not notice this and it didn’t affect his gait. In May his toes became numb and cramp. We thought it was diabetes, and indeed he got that diagnoses a few days later. What was puzzling to our doctor was why the neuropathy was getting worse as his blood sugar was getting better, and his blood sugar wasn’t that bad to begin with. Over the next month he had a MRI which showed some damaged disks and we were sent off the an orthopedic surgeon. That doctor noticed that my husband could no longer stand on his heels and his balance was greatly impaired. Not convinced it was pinched nerves, he ordered a nerve conduction test. During the 3 week wait for that test, his gait severely worsened along with the cramping in his feet, and he no longer had any reflexes from the ankles down. The conduction test clearly showed a loss of myelin not only in his legs and feet, but arms and hands. Our doctor tested for Lyme, B12, heavy metal exposure, and more. We were advised to see a neurologist as quickly as possible. Two weeks later (early July) the neurologist diagnosed him with CIDP. By that time he had drop foot in both feet, couldn’t stand with help, climb stairs, or even walk more than just a few feet.

He started IVIg 3 days later and has just had his third infusion. Luckily he is showing some improvement although it is not as profound as others have had. The realization has set in that this is going to be a long haul.