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Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS?

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Old 08-16-2008, 03:30 AM   #1
Topsie
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Default Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS?

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
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Old 08-23-2008, 12:40 AM   #2
burnmyo
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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
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Old 04-18-2009, 01:36 PM   #3
felinefriend
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Smile spinal myoclonus

Quote:
Originally Posted by Topsie View Post
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
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Old 05-17-2009, 02:43 PM   #4
tambab
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Default palatal myoclonus

Quote:
Originally Posted by Topsie View Post
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
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Old 07-07-2009, 07:14 PM   #5
larry.boggs
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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.
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Old 07-15-2009, 06:57 AM   #6
KJohnson
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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?
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Old 07-24-2012, 08:47 PM   #7
jonmoor
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Default i have what i believe is spinal myoclonus

Quote:
Originally Posted by Topsie View Post
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
i also have involuntary spasms and 'jerks' in my arms, hands, shoulders, legs, all over. It first statred in my legs ib April, but seems to be spreading quickly. To say the least, i'm terrified. i am having an mri of neck and brain this week and i have an appt. to see a neurologist August 1. i pray is not symptoms of an even more serious disease.
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Old 08-01-2012, 01:01 PM   #8
Jeanne Spangler
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Quote:
Originally Posted by felinefriend View Post
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
Hi Lorna, I know how you feel, I to have SSM and have been taking pills for epilepsy, which havn't done any good. I really believe the doctors don't know what they are dealing with so they just make guess. I have talked to a Chiropractor who I went to in another state. He told me then that I had some damage to my neck, thought I had been in accident, which I hadn't. He then told me that down the line I might have some problems and guess what, here I am with SSM. I'm going to check with a Chiropractor here and see if he can help. Problem, my insurance only covers 10 visits but if it helps me, I will sure let everyone know. I'm just glad to know I am not alone, thanks for your help, Jeanne
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Old 08-24-2012, 09:25 PM   #9
Silver
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Quote:
Originally Posted by tambab View Post
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
HI, there is a web site very good info on radiofrequency, I went there because a doctor only miles from me is doing this. I changed my mind after hearing patients and what they are going through now after that surgery...Sorry I don't have the webpage exactly but is was easy for me to find...Silver...
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Old 09-16-2012, 01:18 PM   #10
Jeanne Spangler
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Quote:
Originally Posted by larry.boggs View Post
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.
I also have segmental myoclonus. after seeing my MRI, I could see where the damage was in my upper back and neck, due to when I was young, carrying egg baskets the wrong way. Meds didn't work, just made me spaced out all the time. I went to a Chiropractor, he tried to fix the damage but was unable to. I quit the Neurologist. I really don't know where I am going next but am still trying and if I find any help, I will be sure to let everyone know. This condition has prevented me from driving, bummer. It is a comfort to read the letters from everyone, even though there isn't many of us in this world. I do have restless legs, take Ropinirole every night, works great. I don't suffer from leg cramps or pain anymore. I also take Gabapentin at night too, helps too. Good luck to you, keep in touch. Jeanne
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