Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS?

[earmom]

Originally Posted by earmom

Oops...so sorry...correction FCR stands for functional cranial release NOT CFR mentioned earlier. My mistake.

We tried FCR, functional cranial release in March, 2013. We watched this doctor slow the clicks and heard them stop!!!! This is not a cure, but it is the best thing we have tried to date. My son only clicks now when he swallows, yawns and sneezes. He still has pain but not all the time. THis procedure was done by Dr. John Lieurance. He works will all kinds of movement disorders. You can witness some of what he does by looking at clips on u-tube by looking for palatal myoclonus. We also recently became aware of a FaceBook page for PM suffers. It is an active web link with lots of information. If you suffer from PM, you might want to join that group and try FCR. It was a miracle for my son. WE have a long way to go, but we are now headed in the right direction.

[pippi1401]

Hi,

I have been suffering from Spinal Myoclonus for 15 years or so now, I have self diagnosed as the Neurologist I saw years ago and the MRI Spinal and brain scan showed nothing, they just wanted to put me on horrid drugs used for epilepsy. My jerks were severe and when I very occasionally get them now, if laying on my back my back will arch up violently and knees come up toward my stomach, I used to get 60 of these in very quick succession, to alleviate it I would stand on our stone floor in the bathroom and put my spine against the coldest wall, it was almost like unearthing!

About 7 years ago I decided to cut out everything in my diet and gradually re-introduce, and found i cannot tolerate ANYTHING with an E NUMBER or ANY preservatives at all... No cut bread, no supermarket cakes, no pizza (unless I make the dough myself and definitely no alcohol (makes it much worse). I followed this and found months, years of RELIEF, certainly not 60 jerks a night every night as it used to be.

However, I have tonsillitis at the mo and have been prescribed Clarithromycin (these drugs are yellow coloured, apparently the drugs company feel that they need to be yellow for some reason) I suffered last night (due to the colouring) and know that I will suffer until the course is finished. I beg all of you fellow sufferers to look at what you eat, I had a terrible time with a Cadburys Creme Egg due to the colouring, takeaways, burgers (shock horror if you eat the buns from the golden arches). PS: I did also have a bad horse riding accident and a neck accident years ago, whether this was the primary cause or not or often wondered if it was the epidural I had during childbirth.