Lewis Sumner/MADSAM

December 20, 2006 at 2:55 pm


I am diagnosed with Lewis Sumner variant of CIDP, which is just another name for MADSAM (Multifocal Acquired Demyelinating Sensory and Motor Neuropathy) Lewis and Sumner are the two Neurologists who documented the MADSAM variant, and thus named it after themselves. My diagnosis was originally CIDP, from UCLA, which was then modified to Lewis Sumner variant by another university clinic, then confirmed again by Mayo Clinic.

The hallmarks of this variant are asymetric weakness, in other words, one leg may be several grades weaker than the other, etc. Additionally, motor conduction block, similar to multifocal motor neuropathy is typically found. It is described as lying between CIDP and multifocal motor neuropathy. The treatment options are essentially the same as CIDP, and it is a chronic, long-term condition. Like pure CIDP, it can be mildly to severely disabling. It can also relapse and remit, or slowly progress.

As far as treatments, I have used IVIG, cellcept, plasma pheresis and high dose IV solumedrol. The solumedrol was a complete disaster which Mayo Clinic believes hastened an already ocurring exacerbation, leaving me severely disabled for over a half year.

IVIG is the long-term treatment of choice for me, I currently infuse 30 grams once a week.

Best of luck to you.