I commented on the problem to my regular doctor at an annual physical and was referred to Dr. Banowitz, my son's Neurologist. The numbness continued to spread and after an EMG in January of 1997 I was referred to Dr. Harati, Director, Muscle and Nerve Pathology Laboratory at Baylor College of Medicine. The Sural Nerve Biopsy and Spinal Tap showed depopulation of myelinated nerve fibers; sausage shaped nerves (tomaculi) and elevated protein levels (64 mg/dL). I was reporting difficulty wearing a watch or a belt and in sitting. The diagnosis was probable HNPP or if this was ruled out, CIDP. Subsequent DNA testing and family history review showed the problem was not HNPP. I had CIDP.
Intravenous Prednisone was prescribed. After talking on the net to PN friends and doing research myself, this steroid frightened me. Through an internet friend I was able to contact Dr. Garith Perry in Minnesota. I had my records mailed to him and he prescribed IVIG.
In June of 1997 I received IVIG treatments 80 grams over two days for three weeks is succession. I then started the 80-gram treatment on a monthly bases starting in August. By this time I had difficulty walking. I experienced leg weakness and balance problems. I was walking with the help of a cane. The continuous pain level was increasing.
I had no improvement until after the November 1997 treatment. Between that treatment and the December treatment I improved in coordination and strength and by January was walking without a cane. The pain continued.
In early 1999 I was walking well but with pain. We started to reduce the IVIG in monthly intervals. When we got down to 25 grams I, again, lost muscle strength and coordination. At 40 grams I seem to be stabilized in strength and balance. The numbness continues to spread.
The numbness is spread past the knees, is in the rectal area and scrotum, in the hands and arms. I had a burning sensation, like sunburn, in the buttocks area, on the back of the thighs, arms and the upper back. That burning has since spread to all of my body. The pain in the feet is continuous and worsens at night.
My right foot has dropped and the toes curled downward.
I take Neurontin for pain, 300 mg, three times a day- it seems to only help the shooting, stabbing pains. I have previously increased the dosage to 2100 mg per day with no improvement. I have previously lowered the dosage to 0 and experienced the stabbing pains. I am back to the 900mg per day and it seems to keep the stabbing pains away.
Ambien helps me get four to five good hours of sleep.
Prescription Medications:
I still work 20 hours a week and am able to walk without showing problems. I cannot walk far as the pain stops me.
Carl --
E-Mail is: Carl@shawneeok.net
Web Page: http://www.ShawneeOK.net