Guillain Barre or not?

[ames2002]

My mother is a 52 y/o with a history of asthma. In Nov 03 she had a severe asthma attack and was in ICU for 7 days, during which she was in respiratory distress and receiving high doses of steroids. She was moved to a stepdown unit, where it was noted her muscles were very weak. After 3 days of ascending progressive muscle weakening, our family physician suspected Guillain Barre and ordered a spinal tap and IVIG. Days after receiving the IVIG she began significant improvement and was moved to rehab. The spinal tap was inconclusive. A week later she began a relapse in muscle strength. A second dose of IVIG was NOT ordered, due to insurance reasons. A 2nd spinal tap was done,  also inconclusive. She made slow progress and was forced to return to work in 2 months (she is a nurse manager in this same hospital.) She has been complaining recently of dizziness and has fallen at work. Last Thurs she began uncontrollable shaking in arms and legs, was admitted to the hospital. She is
unable to walk w/o assistance.The drs. now say she never had GBS. She has had muscle biopsies, nerve studies, every test imaginable. MS, ALS, and most other neuromuscular diseases have been ruled out, but no one seems to know what she DOES have. 2 drs. have also suggested this might be an emotional problem. She has seen several different neurologists at 2 hospitals-none of them have any answers, other than it is not GBS. She has all classic symptoms of GBS except for her spinal taps being inconclusive. If its not GBS, what is it? Please help.

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

The progressive muscle weakness at the initial illness could have been due to a muscle disease, critical illness myopathy, or critical illness peripheral neuropathy. These disorders occur in ICU patients who typically have been given large doses of steroids over several days to weeks. GBS should also be considered, but given the normal spinal taps, this is less likely. However if she recovered from this event and now has new symptoms, then the two events may not be related. I hope this helps, good luck.

[ontherecord]

Any autoimmune or demyelinating disorder can mimic GBS.  One of the clinical features of GBS is elevated protein levels in the CSF fluid evinced on the spinal tap.

[ontherecord]

By the way, don't be too quick to accept the doctors' belief that this may be an "emotional problem."  If a 52 year old woman cannot walk without assistance, it's NOT an emotional problem, it's a physical one.  If the doctors who are caring for her cannot reach a diagnosis or conclusion other than one emotional in nature, find yourself another doctor, preferably at an academic health center.  Also, note that when something is labeled as a "syndrome" like GBS, or chronic fatigue syndrome, or post-concussive syndrome, it's a fancy way of saying "we don't know how exactly to explain the symptoms, but we're not ready to discount them either." A "syndrome" is an amalgamation of symptoms that are consistently seen in patients but which cannot be clearly explained by conventional clinical diagnoses.  Doesn't mean something isn't awry.  Something very well could happening.  Doctors routinely attribute a wide variety of physical symptoms to emotional causes, and it's easier for them to label conversion syndrome (or somatoform, or hypochondriasis, or even malingering) than it is for them to say "I don't know."  While emotional problems (such as stress, depression, and anxiety) can cause a wide variety of symptoms physical in nature, I doubt highly that they can cause the inability to walk in a 52 year old woman.

Get to the bottom of this.  You're off to a good start.   And also, you mentioned that a test was not performed because of insurance reasons.  Never let that happen either.  It's better to pay out of pocket and have a necessary (or potentially relevant) test done than it is to let the HMO dicate what's what.  If the test shows something ultimately, you can EASILY recoup the out of pocket costs, otherwise the carrier faces liability (lots of it, too).  If the test shows nothing, then you can't recoup the couple hundred dollars, but at least you'll have peace of mind.  Which, as they say, is priceless.