Body Betrayed | Body Disabled

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Thursday, February 25, 2010

Finally, A Reason for My Small Fiber Neuropathy

In my last newsletter article (February 17, 2010) I wrote the following . . . "Right now, the doctors think I have a “hidden” cancer. The theory is that my body cannot tell the cancer from nerve endings, so when my body attacks the “hidden” cancer it also attacks and kills my nerve endings." All indications were that I had lymphoma--a cancer of the lymph nodes.

I had my second appointment with the hematologist/oncologist yesterday (February 24, 2010). On the way to Vanderbilt for the appointment, Cathy and I wondered what the results of the biopsy would be. We concluded three possibilities: (1) I had lymphoma; (2) they would find nothing wrong, (3) I would have something really weird happening with my body.

Here is the good news. I do NOT have lymphoma. Praise the Lord! God answers prayers! They were able to make this diagnosis because they could physically examine several entire lymph nodes under the microscope. This would have not been possible without the lymph node biopsy on Wednesday, February 17, 2010.

Doctors were able to diagnose from the biopsy that I have a benign condition called Lymphoid Follicular and Paracortical Hyperplasia with Lymphoid Sinus Histoicytosis. (I had to go to school to even type all of this!). Basically, my lymph nodes are very, very overactive. This condition by itself is not unusual.

Here is where my problem gets complicated. My lymph nodes are producing an unknown auto-antibody that is attacking and killing my nerve endings. It is the same thing the doctors thought was happening to my nerves, but the problem is not caused by cancer--it is caused by dysfunctional lymph nodes. This is a very rare condition; possibly more rare than paraneoplastic neurologic syndromes. It looks like option three--something really weird is happing with my body--is where we are now.

I have tested negative for every known antibody that attacks the nervous system. So, the antibodies my lymph nodes are producing are either undetectable yet, or new to medicine. I told you I was strange!

There is not even a good term in medical texts to describe what I have, so, I will coin a new phrase: lymphoid parahyperplasic neurologic syndrome. I coin new words all the time when I preach, so this is no problem! Paraneoplastic means "beside cancer" (caused by a hidden cancer). My new phrase, lymphoid parahyperplasic neurologic syndrome, means "neurologic dysfunction beside, or along with, hyperactive lymph nodes." Works for me, or rather, is working on me!

The next step is to meet with my neurologist on March 9 to talk about autoimmune therapy treatment options.

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