Overdue Health Update

This blog has been dormant for a long time. However, since I have posted a few comments on other blogs in which I have had to use my blog identity I've decided at least to update my health status. I may resume blogging later. After my appointments at Johns Hopkins in 2009, I decided to focus on my orthopedic problems, that is, the problems with my spine, but from the perspective of their effects on my nerves. I, therefore, went to see the best neurosurgeon in the state. Although he ordered several tests that confirmed rather dramatic neurogenic issues, he could not help me. Then after running through a number of neurologists, the eighth finally ordered a simple, seemingly-obvious blood test that no previous neurologist had considered: a sensorimotor neuropathy panel. The results showed sky high levels of a particular auto-antibody. In other words, my own immune system was attacking my peripheral nerves. Finally in February 2011, I started to receive loading doses of IVIG, immunoglobulin by infusion, for six months followed by maintenance doses every three weeks. After the third month of loading doses sensation suddenly returned. I was shocked by how little sensation I had had until then! After the fourth month, I was able to get up out of my wheelchair to walk, very hesitantly. However, I received less than half the recommended dose during my maintenance infusions for 1 1/2 years, letting my nerves degenerate further. The disease, chronic inflammatory demyelinating neuropathy* (CIDP), is very rare, and I seem to have an unusual and very aggressive form of it. I remain incurable and completely dependent on my treatments. Because it took so long to get a diagnosis, some of my muscles and nerves have been permanently damaged. I find it very difficult to sit up for much longer than an hour, even in a chair with a back; my paraspinal muscles, especially, have been damaged. Other motor nerves have also been permanently affected making me very clumsy. With regard to sensory nerves, most of my sensation has returned but my right thigh feels nothing. The autonomic nervous system, the nerves that control the internal organs as part of the peripheral system, has also been affected. I have not seen any improvement there. I recently suffered an episode that followed exactly the Merck Medical Manual's description of a heart attack. At the time I felt it was a problem with my Vagus nerve. Web sites on CIDP are very mixed about whether CIDP is fatal. However, this is just an academic debate to a patient such as I. If the continuing degeneration of my nerves hit my heart and/or lungs my life will be at risk. In that case the documented cause of death will either be heart failure or suffocation, but the real culprit will have been CIDP.