spinal myoclonus, palatal myoclonus- anyone out there?

I have spinal myoclonus. It has been spreading down my spine and up my spine. I get horrible spasms in my back, neck, spine and my right arm spasms - visible to others. This condition is both very emotionally exhausting and very physical exhausting.  It has been a very difficult journey and I would really like to find others dealing with this same condition. On top of this I have palatal myoclonus where my ears constantly pop as a result of my mouth palate spasming. Anyone out there with spinal myoclonus and or palatal myoclonus please get in contact with me. Thanks

[Dr Sharma]

Hi there. Spinal myoclonus is myoclonus in the spinal cord including segmental and propriospinal myoclonus. Palatal myoclonus is a regular rhythmic contraction of one or both sides of the soft palate. These can be accompanied by myoclonus in other muscles like face, tongue, throat and diaphragm. These are very rapid about 140 a minute and may persist even in sleep. Treatment includes stopping any drugs suspected to be causing myoclonus and treating metabolic derangements. Drugs include anticonvulsants though at times paradoxical reactions are noted.  Multiple drugs may be required like clonazepam, valproate, piracetam, hormonal therapy. Take care.

[auntlolo]

Dr Sharma Thanks for your message. Please expand on "metabolic derangements". What can be done about spinal myoclonus. I have been going to accupunture for it for 2 + years and have been taking Toporol and Valium. Previously I took clonazepam and Nuerton for many years. Nothing seems to help and it is spreading. I notice that when the arm/back/neck spasms are really bad the ear/palatal spasms are ok/do-able and vica versa. I have been living with this nightmare for the last 7 years and I am BEYOND done with it! We are thinking of going to Mayo Clinic. Suggestions? Thanks