Hi Topsie,
Thanks for your post about these rare conditions. I currently have myoclonus and docs still have not given me an actual diagnosis. I have palatal myclonus/clicking and popping involuntary when I open my jaw slightly and when I lye down to sleep. I have involuntary movements of both legs, arms, fingers, shoulders when lying down while awake and when fall asleep they wake me up. I even went to the University neuro muscular disease dept. for evaluation and they only said yes we believe she has myoclonus but did not diagnose the cause! So now I must go back after waiting months for an appointment since my symptoms have continued to get worse. I have a really bad neck with spinal stenosis due to bad discs etc. as well as a tarlov cyst on the thoracic spine and a herniated lumbar disc. I even saw the neurosurgeons at the same University because my primary blamed my symptoms on my spine/neck injury but the neurosurgeon said my symptoms were not due to my spine but of course did not tell me what is causing the myoclonus and burning pain etc. I also have fibromyalgia so he tried to just blame it all on that and said I needed to try biofeedback or other treatments to help cope with chronic pain. I have had fibromyalgia for 15 years but all these other symptoms are new beginning in past few years after having worsening of my spine injuries due to a fall, had major surgery for vascular and neurogenic thoracic outlet syndrome and deep vein thrombosis in both shoulders and then was on multiple medications for almost two years. My current doc has taken me off of many meds to see if I am having med side effects causing the myoclonus but I still have it even off the meds. What type of doctor diagnosed your palatal myoclonus and spinal myoclonus and what diagnostic tests did they do for you? Any meds that have worked for you? I would like to be armed with information before my Neuro appt in March so it is not a waste of time and money. I am sure you understand how many docs a person with these symptoms can see and still not have a diagnosis! I am so sorry for your suffering these conditions and hope you have found treatment that has helped you. Thanks, Numbhands.