I'm hoping that someone might be able to speak to (or provide any additional info) the following:
I've been dx (via muscle biopsy) w/ Malignant Hyperthermia (non-RYR1 type) after a 1999 fulminate MH intra-operative episode and since that time I've experienced a drastic increase in muscle symptoms (that I had previously not experienced). Most notably muscle profound/pervasive cramping, twitching and stiffness. That being said, I regularly have a mildly elevated CK level of 550 - 750. Also, I've had a subsequent muscle biopsy to rule out an underlying myopathy. And though this biopsy came back with a normal presentation...the EMG indicated the existence of an "inactive myopathy." Unsure about conflicting info between the EMG & biopsy?
Regarding the MH, I'm consulting w/ a physician at the MHAUS web page; however, since most folks w/ MH do not experience muscle problems outside the surgical experience...I'm in a bit of an odd situation and therefore looking for info elsewhere. The research physician that's been consulting w/ me from MHAUS has indicated that her working hypothesis is "Malignant Hyperthermia w/ a possible mitochondrial irregularity." Any thoughts regarding this would be appreciated?
Finally, after many hours of "Googling" I've run across the disorder called "Isaacs' Syndrome" and many of these symptoms seem to be consistent w/ my current situation. SO, is anyone aware of an existing relationship between MH and Isaacs' Syndrome?
I thank you in advance for your time & effort.