Isaac's Syndrome

Posted by Dan on April 30, 1999 at 10:18:08
I have posted a few times and now here's the latest,Isaac's syndrome.I have elevated cpk levels with constant muscle movement.I also have a sluggish salivary gland.Does this happen with Isaac's? I have been cleard by a gasto ,rehm, and sent back to a neuro.
So far after 65 blood tests,an emg,all cardio and 4 hospital stays this is what they are looking into.
MYck leve last check was 370 it goes from 200 to 500,is this serious?They all tell me it will go away? when? 7 months now!
Also they are saying it may be a reaction from a tetnus shot? What recourse do I have and how can they test to see if that is the case?
I was totally physical fit before the tetnus shot.
On my blood test the only thing that came back was high lactate acid and serum folate? My gastro says no malabsorbtion problem,colonopsy and endopsy done.Any ideas just lookin for help.
Thank you for your time and keep helping all us who are seeking help.
Dan
Posted by CCF Neuro[P] MD, RPS on May 01, 1999 at 14:42:22
Dear Dan:
In the medical literature, there have been many names for continuous muscle activity (Isaacs, neuromyotonia, continous muscle fiber activity, widespread nyokymia with delayed muscle relatation).  In each case the excessive and spontaneous activity can be attributed to hyperexcitability of terminal jparts of the motor nerve fiber.  There may be generalized muscle stiffness along with the constant twitching of the muscle.  However, the EMG is abnormal for it shows continuous muscle activity.  Didn't you say that the EMG was normal (?)  If I have this wrong I am sorry.  Anyway, the treatment is dilantin or cabamazepine.  Sometimes this entity takes several years to resolve.  The majority of cases, it is a benign entity.
Sincerely,
CCF Neuro[P] MD