Other side

April 21, 2010 at 7:16 am

Welcome, Gary. I would like to add to others comments also that for neurologic deficits that threathen function in life, immunoglobulin, plasmapheresis, or steroids are the treatment of choice. You do not say much about function other than that you have tingling on your hands. I would think if you are lucky enough to NOT have a lot of problems with function right now nor progression (you say you are not getting better rather than saying you are getting worse), that the doctor was probably making sure that all the problems were not due to a B12 deficiency. You have gotten the appropriate replacement, it seems with shots of B12 frequently to replace levels and then to maintain levels. If you are able to live life normally and are not getting worse, then almost all neurologists would not treat. It is hard to tell if immunoglobulin or steroids or plasmapheresis are working if the deficits are limited or if there is not worsening–especially if there is a confounding and coexisting diagnosis like B12 deficiency. Make sure when you return to see the doctor that you let him/her know what changes are affecting your life and ability to do things in life. Second point–immunoglobulin and plasmapheresis work rapidly to limit damage by reversing the effects of autoimmune attack on nerves, but they do not treat the underlying disease–they treat the manifestations of it. It is necessary to use them if there are bad consequences happening–someone cannot walk–for example, because they work fast. Azathioprine often takes a year to work–it is slow because it affects the disease process itself–not just the manifestations of disease. This is really a smarter approach to disease control–it is just that many people cannot wait a year for results and that it is still really hard to come up with exactly the right dose because this is a rare disease. Rather than saying run from your neurologist, I would advocate that he/she is being smart to treat NOW to prevent future bad problems.

For those that get immunoglobulin or plasmapheresis, the CIDP can “burn out” on treatment–at lot of the reason being that removing antibody to nerve cells or swamping it out stops the cycle of antibody causing damage that exposes more sights for stimulation of the immune system and thus more antibody, etc.
WithHope for a cure of these diseases