ME (CFIDS) Being Misdiagnosed as MS!
By S. Blair, M.D.

The National CFIDS Foundation *

It is not unusual for a patient with classic ME/CFIDS to be
misdiagnosed with multiple sclerosis (MS).  I know of several
diagnosed MS patients who have been sent to Beth Israel
Deaconess Hospital's MS specialist, Charles M. Poser, M.D.,
FRCP, only to return to their diagnosing physician with a diagnosis
of ME(CFIDS).  This scenario was even seen with one patient of an
internationally known expert!  The National CFIDS Foundation has
questioned members who write of their immediate family members
being diagnosed with MS.  Indeed, it is an alarming and prevalent
mistake.

Why does this happen?  Neurologists typically send patients
suspected of having MS for a brain-imaging test called an MRI
(magnetic resonance imaging).  When the neurologist sees the
telltale signs of cerebral white spots on the MRI, they diagnose MS.
 

In a 1983 publication of the Annals of Neurology (13), Dr. Poser
wrote of 366 patients who had been referred to him with an MS
diagnosis.  He found, to his own astonishment, that 22% actually
had ME(CFIDS)!  How many thousands continue with an improper
diagnosis?

There was a recent medical journal article where MS was
classified into subsets.  The subset that was described as having
primary progressive MS sounded much like ME!  A more recent
one, published in the Journal of Neurology in April (Vol. 248, No. 4),
found "Autonomic dysfunction in multiple sclerosis" especially
prevalent in those patients with primary progressive MS.  Are they
really seeing ME patients who, as we all know, have autonomic
dysfunction?

As written in a previous issue of the Forum, MS and ME have
much in common and neither of them had definitive diagnostic test.
 

Physicians must look for some very subtle differences.  While the
MRIs are similar, the ones of ME patients tend to show increased
signal intensity in the central nervous system's white matter near the
white-gray delineation rather than in the white matter of the
periventricular area. In ME, these "unidentified white spots" tend to
be punctuate but in MS they tend to be more ovoid.    An MRI should
never be the sole basis of diagnosing MS. The majority of
radiologists who interpret MRIs have no training in ME diagnosis
and many neurologists, shamefully, rely on the radiologist's
interpretation!

Sharing one causative virus, HHV6, sees so many symptoms that
overlap but the physician who is aware of both MS and ME is rare.
 

The following neurological symptoms are seen in both but those
with asterisks(*) are seen mostly in ME while those with a plus
sign(+) are seen more commonly in MS:

slight or partial paralysis (paresis)+
double-vision+ (diplopia)
urinary retention
facial paresis+
Babinski's sign+   (a reflex common in infants but indicative of
brain or spinal cord disease)
ataxia+   (staggering gait, muscle in coordination)
focal weakness
transient blindness
orthostatic intolerance*
syncope*   (brief fainting)
tinnitus*   (ringing in ears)
headaches*
monocular color blindness+
hemifacial spasms+
painful lymph glands*
optic neuritis+
scanning speech+
trigeminal neuralgia+   (pressure on nerve causing stabbing
pain)
cognitive difficulties*
pain*   (rarely seen in MS)
migratory arthralgias*   (moving, burning sensations)
intolerance to medications*
steroid responsiveness+
GI problems*   (IBS, vomiting, and diarrhea are seen in ME but
bowel retention or incontinence is more usual in MS)
general weakness
post-exertional malaise
fevers, chills*
sore throats*

If you've read this and still are unsure which disease you have, by all
means get a second or third opinion!  ME does not turn into MS,
according to the experts, nor vice-versa, although at least one expert
is now unsure of this.  If this has been told to you, most likely you
were misdiagnosed to begin with.


The National CFIDS Foundation *
103 Aletha Rd, Needham Ma 02492 *
(781) 449-3535
Fax (781) 449-8606