Posted By CCF Neurology MD:NT on September 13, 1998 at 23:11:49:
In Reply to: CIDP posted by Pamela on September 13, 1998 at 07:55:25:
My mother was diagnosed with chronic inflammatory demyelating polyneuropathy
about l8 months ago. She was in good health at 66 years old when she was
diagnosed. She has become a total invalid and seems to be making no progress
or improvement. She has had all the current treatment regimens, i.e.,
interferon injections, IV IG plasma cleansing and her medications include
prednisone, neurotin, she has had emuran and other drugs which did not help.
Dr. Peter King, at University of Alabama in Birmingham says that he cannot
help her further and we have no idea what to do. She is becoming more
depressed daily and beginning to believe that she will never get better.
Is there a clinic or treatment center where we might find someone to help
her? She lives in a small town in Alabama and as far as I know there are
no neurologist there.
Plasma exchange and IVIg are standard therapies for treating CIDP, besides corticosteroids. If your mother indeed has CIDP, the fact that she has progressed is discouraging. In this situations more toxic immunosuppressants such as Imuran (azathioprine), cyclophosphamide (pulses), and cyclosporine are used, if tolerated. These measures are less well studied than plasma exchange or IVIg, and can be rather difficult treatments to undergo, specially the cyclophosphamide.
It is always worthwhile seeking a second opinion from another major academic neurology department with a good neuromuscular section. This may help for a variety of speculative reasons:
1. The disease has progressed, and other diagnostic and therapeutic possibilities may have appeared.
2. The plasma exchange or IVIg treatments may have been insufficient.
3. Other therapeutic modalities could be tried.
4. Enroling for possible ongoing trials may be an option.
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