Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS?

[Topsie]

Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition :) (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie

[burnmyo]

Hi Topsie, I also have palatal myoclonus. It was diagnosed by nasoendoscopy as palatal and pharyngeal myoclonus.

I believe I also have it in the larynx and oesophagus (it spasms on its own).
The myoclonus was clearly visible on vidoefluroscopy (done to check for dysphagia)...which I also have to some degree on the right side.

My palatal myoclonus is clearly visible whether mouth opened or closed (twitching constant in throat etc).

Over a period of years if these get bad, I've gotten major cramps R side facial and R throat/neck area. It burns and cramps and I'm out laying on my left side with ice flannel towels applied to these areas.

I believe that that the oesophageal-stomach junction cramps/spasms and burns with the pain going right thru to the back.

It is so difficult when I move my arms it makes the palatal & other myoclonus worse.

What are you taking for it? How was it caused?

cheers
burnmyo

[felinefriend]

Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition :) (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie

Hi, I have had spinal myoclonus for 20 years and after 18 years of being treated for epilepsy just this week I have been told this is what it is. The constant spasms stop me sleeping as I jerk while awake and while alseep. Keep smiling, and live your life around the myoclonus. The Docs at the Western in Edinburgh, Scotland , invited me to be one of their most interesting cases, (myoclonus is good for something) got to laugh.Please keep in touch it's nice to hear from someone who else with this condition. Lorna

[tambab]

Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition :) (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie

Hi Topsie,
I am 35, with 2 young kids, and I have palatal myoclonus.
I understand your sadness. I have had for 15 years and it is getting worse....
I am going to start on antiseizure meds, but I heard there are Doctors in Turkey treating this with radiofrequency.
I would love to talk to you to see if you have had any relief since posting in 2008.
Take care

[larry.boggs]

I have been diagnosed as having segmental myoclonus. One neurologist said it was spinal myoclonus. I beblieve this started about 18 months ago with neck surgery. I ended up with a real bad case of MRSA. The wound had to be re-opened and all the hardware removed. The wound was left open and I had to take antibiotics intravenously for 3 months. One neurologist tried to treat it with medication and I am now waiting on an appointment to see another specialist. Anyone have any ideas about this.

[KJohnson]

My son has been diagnosed with palatal myoclonus. We are looking for someone to administer botox. We live in Ontario Canada - do you get botox injections? Who does this?