Qestion for Bill

November 6, 2008 at 8:36 pm

[QUOTE=Billt]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.[/QUOTE]
Just wondering if you had immediate exacerbation of your symptoms with Solumedrol? My husband has CIDP MADSAM. His only treatment thus far has been IVIG (other than one two week period on Immuran in which he got sepsis). He has no pain symptoms at all. Just profound atrophy and weakness of right arm and some foot drop of right foot.