I am in limbo with my diagnosis situation. My initial symptoms was an “MS Hug” if I can call it that, and tremors for years. Then I was better. Then on 4/1/18 I had a sudden episode of amnesia for days and extreme intolerable temperature sensitivity and tremors again. My MRI on 5/15/18 showed multiple lesions in periventricular, subcortical, and subepidnjmal. I now have a new symptom of confusion, worse tremors and I was unable to find my way home a few days ago. I went to the ER and the new MRI wasn’t compared to old but they said it was similar. They gave me the new McDonald criteria from 2017 and wouldn’t I meet that if I have had > 2 attacks and lesions in >2 areas including periventricular and subcortical (juxtacortical now includes all cortical)?. I just want to get treated ASAP. I’m only 36. I’m seeing my neurologist Tuesday but she’s not using the criteria. Should that be used in this case?
I can feel your frustration as I read you message. I suspect without knowing your case or examining you, that the problem with establishing a diagnosis in your case is a reflection of the non specific nature of your symptoms, not a reflection of diagnostic criterion. The truth is that the diagnostic for MS has not changed except for very specific and characteristic cases. Let me explain using your case as an example. The symptoms you describe are not very specific for MS and would not be considered attacks or events.
1. The problem with the term "MS hug" is that it implies that this symptom is only caused by MS. In fact this is a fairly non specific symptoms which may or may not reflect any kind of problem affecting the spinal cord.
2. Tremors are more commonly caused by things other than MS. Only a very specific tremor, called an intention tremor, is commonly caused by MS. Even then the tremor is almost always associated with other symptoms caused by problems in the brainstem or cerebellum, important areas in your brain.
3. Acute onset of amnesia and acute geographic disorientation (“not finding my way home”) would be very unusual in an MS patient. These symptoms are more commonly associated with seizures, limbic encephalitis, or transient global amnesia.
Lastly MRI scans are notoriously non specific for a diagnosis of MS, except when they meet certain specificity criteria and occur in a specific clinical setting. Location is only one component of the specificity criteria so I can not really comment on your description of the findings.
The main diagnostic issue in your case is to identify and account for any unusual or uncertain features AND exclude other disorders that may produce your symptom complex. A good neurologist will do this and not over-emphasize diagnostic criteria (McDonald criteria) that are only meant to characterize people for clinical research.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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