Reply To: my cousin diagnosed as CIDP (NF155 IgG4 positive)
More on the treatment Jim mentioned.
“Abstract OBJECTIVE:
To describe the response to rituximab in patients with treatment-resistant chronic inflammatory demyelinating polyneuropathy (CIDP) with antibodies against paranodal proteins and correlate the response with autoantibody titers.
METHODS: Patients with CIDP and IgG4 anti-contactin-1 (CNTN1) or anti-neurofascin-155 (NF155) antibodies who were resistant to IV immunoglobulin and corticosteroids were treated with rituximab and followed prospectively. Immunocytochemistry was used to detect anti-CNTN1 and anti-NF155 antibodies and ELISA with human recombinant CNTN1 and NF155 proteins was used to determine antibody titers.
RESULTS: Two patients had a marked improvement; another patient improved slightly after 10 years of stable, severe disease; and the fourth patient had an ischemic stroke unrelated to treatment and was lost to follow-up. Autoantibodies decreased in all patients after rituximab treatment.
CONCLUSIONS: Rituximab treatment is an option for patients with CIDP with IgG4 anti-CNTN1/NF155 antibodies who are resistant to conventional therapies.
CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence that rituximab is effective for patients with treatment-resistant CIDP with IgG4 anti-CNTN1 or anti-NF155 antibodies.”
here: http://www.ncbi.nlm.nih.gov/pubmed/26401517
This gbs-cidp website has a list of Centers of Excellence.
Perhaps if you contact USF Tampa ( a center of excellence) they will have a referral to someone in Miami.
Website http://www.health.usf.edu/medicine/neurology/faculty
Phone Information
Department Of Neurology – 813-974-3541
Good luck.