Email, 02/26/10

I spent some time today e-mailing with my neurologist, Dr. Christopher Lee. I wanted to confirm what I understood the hematology/oncologist to say. My thinking is correct. My hyperactive lymph nodes are making an unknown antibody that is attacking my nerves. Although this is not cancer, the effect on my nerves is the same and they are slowly, progressively getting worse.

My neuropathy falls under the general category of Autoimmune Mediated Neuropathy. My small fiber neuropathy, etc, is caused by my body attacking itself. I did not know that I was even mad at me!

Since we do not know why my lymph nodes are hyperactive, there is no way to treat them to stop the formation of antibodies. Since the antibody is unknown--you can't look for what you do not know--there is no way to counteract the antibody with an anti-antibody.

I will have a biopsy of selected nerves in the near future. This will help doctors determine the extent of my damage and if there is a chance for recovery.

There are other treatment options which included filtering all my blood through a machine, removing my old, antibody contaminated blood plasma, then replacing it with new, uncontaminated plasma. In essence--an oil and filter change. This would involve five to seven days in the hospital at Vanderbilt. I will let the Dr. Lee know my decision by Monday morning.

Click here to read more about Small Fiber Neuropathy

Click here to read more about Autonomic Neuropathy

Click here to read more about Dysautonomia