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

    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 an previous issue of the Forum, MS and ME have much in common and neither of them have 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 punctate 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 astericks(*) 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 incoordination)
  • 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