Posted by CCF Neuro MD on April 23, 1997 at 11:56:36:

In Reply to: Autoimmune neuropathy posted by Debra on April 09, 1997 at 13:00:39:

: I have an autoimmune disease caused by too much antiGm1 antibody. It has primarily attacked lower motor neurons. It is not Guillain-Barre, same antibody, but it is a slowly progressive sort of thing. Currently I take 500-900mg Neurontin per day (depending on my symptoms and tolerance of it), 150 mg Imuran per day, 45mg of Elavil and see a Dr. at a pain management clinic for help with the more painful areas. We have been treating it with gamma globulin infusions every 2-3 mos. as symptoms (usually an increase in pain and weakness on the right side) indicate the antibody is on the rise. We have avoided the Cytoxin-hemopheresis route due to other health problems. Recently it became evident that I have lost muscle mass in my right let. Is there any way of stopping this from happening to the rest of my right side? Any suggestions, direction we may have overlooked?

The management of your condition by your doctors seems to have been quite appropriate. The medical term for your illnes is called motor neuropathy with conduction block. It is a descritive term of what the disease produces which is damage to the nerve fibers going to innervate muscles and thereby causes weakness. The sensory nerves remain relatively unaffected. Because of this reason, pain is usually not a significant component of this disorder. Patients may develop pain as a consequence of mechanical changes caused by weak muscles. The antiGM1 antibody is seen in a significant percentage of patients with this disorder but not in all patients. Aside from clarifying why you have pain with this disorder, I don't have much else to suggest. An EMG test is crucial in identifying this disorder. You may want to make sure you do not have some other neuropathy affecting both motor and sensory nerves which is a completely different entity and can be caused by numberous etiologies. If you want a second opinion at the Cleveland Clinic I would recommend either Dr Kerry Levein or Dr Robert Shields. You can arrange for an appointment by calling 216-444-5559. Good Luck!