Please help diagnose this illness.

[Sherry2]

My mother became ill November, 2001, a week after getting a flu shot.  It started with severe cramping in her calves.  It progressed to severe pain which moves from her abdomen, to her sides, to her back, at different times.  She was nauseated at times and started tripping because she couldn't pick her feet up.  She was also very weak.  She began using a walker in March.  In April she could no longer walk and in May her legs became completely paralyzed, which they still are.  She is unable to sit in a wheelchair due to extreme pain in her tailbone area.  She is completely bedridden.  She was finally diagnosed as having Guillian Barre in May.  Her spinal column fluid showed a protein count of 500.  It is now down to 197.  Her white blood cell count in her scf is normal.  She has had approximately 50 IVIG treatments and 12 Plasmapherysis treatments.  She is on Neurontin, Imuran and Hydrocod (for pain).  She has not improved with any of these treatments, in fact she is worse.  We took her to a specialist at the Southwestern Medical University two weeks ago.  They are unsure of her diagnosis.  Please help diagnose.

[Sherry2]

Thank you Christine, I'll do that.

[Lady Jay]

GBS or Guillain Barre Syndrome strikes, the patient goes down (severity varies from patient to patient), then recovers (time differs from patient to patient) but not without varying degrees of residual depending on the severity of the strike.   CIDP or Chronic Inflammatory Demyelinating Polyneuopathy strikes... and remains.  It is known as "Chronic GBS".

Because of its rarity, talking to people suffering from and actually recovering from these disorders is imperative, so therefore, I encourage you to please visit the Guillain Barre/ CIDP Forum at MGH (Mass General Harvard).  Go to: www.braintalk.org  for some true one-on-one enlightenment.  There are individuals there that will listen to you and offer support.  I'm one of them.  My name is Christine... and I am a post-30 year veteran of GBS.

Take care.

[Sherry2]

Thank you so much.

[CCF-Neuro-M.D.-JT]

Very sorry to hear about your mother's condition. From your description of her symptoms and workup, it certainly does sound like it's an immune mediated disease affecting the peripheral nerves such as Guillain Barre Syndrome (GBS) or chronic inflammatory demyelinating polyneuropathy (CIDP) - especially with the high protein count and normal wbc count in the CSF. The long time course and high protein level make it atypical (but not completely impossible) for GBS which is usually about 3 weeks from start of symptoms to maximal deficit (most severe weakness) rather than several months. CIDP is certainly a consideration and may be treated with steroids.
If the diagnosis is still in question, consider another opinion at a major academic center with a neuromuscular specialist such as Baylor in Houston or if you're willing to travel - the Cleveland Clinic. An EMG may also be helpful in determining degree of severity, diagnosis, and prognosis. Best of luck.