It started in Sept 05 with severe itching in my left arm, by the middle of Oct my ring and little finger on that hand were, diagnosed as cubital tunnel syndrome-(cortisone shot and sling.) By mid-Nov it had moved into my back as severe pain and numbness in left foot. In Dec both my right hand and foot were involved(numbness and pain). Through the first four months of 2006 it continued to get worse and by summer I was using a wheel chair for transportation and opiates for pain. IVIG and prednisone have improved my condition so that I can move around fairly well with a cane and even though my hands and feet are numb I manage quite well. My proprioception is greatly decreased and I suffer from ataxia. Thanks. Morris
I am going to attempt to answer your questions Iowagal:
When my wife recognized that this disease was going to be a long term problem she began to maintain a diary of every incident that occured since the beginning. We were able to condense this into a document that provided the doctor with a good history of my problem. We also had copies on discs of every MRI, CT scan, bone marrow biopsy, spinal tap, etc. that I had undergone over the past 3 1/2 years. Dr Barohn studied these and spent 80 minutes questioning and examining me. I have never had such a complete, professional exam and it was given in a friendly, relaxing atmosphere. That afternoon I was give a nerve conduction and needle EMG. 12 vials of blood were taken. Dr Barohn had told me before this that he thought I had a neuronopathy rather than CIDP. He forwarded his report to my neurologist who explained it to me a week later.
The report also said I had IgG MGUS but what role this had with regard to sensory neuronopathy is unknown. It might simply reflect the response of immune system that is causing the neuronopathy.
I apologize for this lengthy reply and hope I answered some of your questions in the space available. Thank you. Morris