Lights, Tunnels, and Model Trains

My skin biopsy results came back from testing at Johns Hopkins. Dr. Lee and I were both surprised to discover my small nerve fibers were nearly normal; just some swelling. Wow! From all I can gather, everyone was expecting to see severe damage. Just another example of me not being normal--weird if you prefer.

In a blog a few days ago (March 23, 2010) I wrote, "I know what it is like to see a light at the end of a tunnel, only to find out its a freight train." When I first read about my skin biopsy results, that was exactly how I felt. Oh no, back to square one again!  Have we lost even this diagnosis and possibility of help and treatment?

After more conversation with Dr. Lee, this unexpected skin biopsy report is more like a model train than a freight train. That is good news!  My small fiber nerves are present (good), but not working correctly (bad).  We still do not know why the small fibers are not working correctly.

Dr. Lee still believes I have autoimmune small fiber neuropathy. That is the diagnosis that best fits with all of my symptoms and we will proceed on this assumption. They still cannot rule out the possibility of some type of cancer (paraneoplastic syndrome).

I will have a repeat CT/PET Scan sometime in April to evaluate my lymph nodes again and to look for hidden spots of cancer. My next scheduled appointment with Dr. Lee is in July. A July appointment will allow more time to see how effective the plasmapheresis will be.