Lewis Sumner Syndrome

Hello Barry:

As per my earlier post in this thread, I am diagnosed with Lewis Sumner variant, (also called MADSAN or Multifocal CIDP) My diagnosis has been reaffirmed by two university specialists and Mayo Clinic. I have been receiving IVIG since 2004, with modest success in that it slows progression. I have also been treated via plasma exchange and Cellcept. In addition, in 2005 I was placed on a high-dose regimen of IV Solumedrol. (corticosteroid)

Solumedrol, it was concluded, was a very significant factor towards hastening and worsening a severe exacerbation that lasted over six months, and left me with major disability still today.

I definitely do not have MMN as I have sensory loss and pain, in addition to asymmetric motor weakness and conduction block – they say I have a pretty textbook presentation of aggressive Lewis Sumner Syndrome.

So, I guess my point is that there is so little really known about these diseases – in my case, steroids indeed caused a severe flare-up of disease activity, and doctors really can’t say why.

The treatment I am most interested in for myself is the ultra high-dose cyclophosphamide immunoablation regimen, as my case has been pretty refractory to more subtle immunosuppressive treatments.

Also, don’t be so concerned about IVIG side-effects, its considered a pretty benign treatment, relative to risk, etc.