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CIDP -- usual course of disease and prognosis

  my 87 yr old dad recently received probable dx of CIDP after workup by neurologist which included extensive bld. work and EMG/NCS........  symptoms have included: 1- declining weight (due to loss of muscle mass?) despite healthy appetite; 2- seeming inability to swallow mucous/phlegm that collects in throat and is only dislodged and expectorated when eating food; 3- feeling of heaviness in arms and legs which has impacted his ability to walk and use his arms for shaving, eating, etc.; 4- loss of ability to maintain balance w/o support.  this all has been progressive over about18-24 mos.......
  have been able to get info about the disease, symptoms and presentation, treatments, etc. but little about end course of the disease and probable prognosis..........                                                                                            this is impt. to myself and my parents so that we can make plans for advanced directives, long-term care, in-home nursing, machine feeding, etc., if the prospects are for continuing decline to the point of being wheelchair bound, bed bound and unable to take oral nutrition.........
  would appreciate journal citations and/or case studies/reviews......thanks
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Dear Sandi:
The modes of evolution and prognosis of CIDP are variable according to
the literature; here is a sampling of some studies I am familiar with:
  In general (all groups), CIDP begins and evolves slowly, reaching maximal severity
   anywhere from several months to a year after symptom onset.
  The pattern of symptom evolution is what varies, but appears to fall into
   distinct subgroups:
    1. Monophasic and slowly progressive
    2. Stepwise and progressive
    3. Relapsing
    4. AIDP-like course (i.e. acute, monophasic illness with more rapid
                         onset of max severity; self-limiting)
    Subtypes 1-3 each represent approx. 30-35% of CIDP patients studied
    in the Dyke and colleagues study (1975); the numbers are slightly different
    in another well known study (McCombe and collegues), with slightly different
    subtype classifications.
    Subtype 4 is relatively rare, accounting for approx. 16% of the cases
    studied in the McCombe and Ropper et al study.
The patients who tend to have discrete relapses have a better prognosis
than those with a progressive course (i.e. subtype 3 vs. subtypes 1 &2);
73% of these patients made a good recovery in the McCombe's series.
In a small (<10%) of patients, the disease tends to burn out after many years
and treatment can be stopped.
The general prognosis (outside of the groups described above) is poor, resulting
in many years of disability and dependence on treatment.
It will take time to see which clinical pattern your father falls into,
and will ultimately define the most likely prognosis. Good luck to you and
your family.

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